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Frequently Asked Questions

 


I have head and neck cancer. My doctor is recommending a gastrostomy feeding tube (G-tube). Can you elaborate on some pros and cons of having a feeding tube placed to help with nutritional intake during radiation therapy for head and neck cancer?

Having a gastrostomy tube place proactively in order to maintain optimal nutritional intake is commonly done now for patients receiving radiation in the head and neck area, rather than waiting to see if they will lose weight.

Please be sure to request both initial and ongoing consults with the Registered Dietitian (RD) at your cancer treatment facility so that the formula chosen will meet your nutritional needs and any adjustments can be made in light of your tolerance and requirements.

Please read the following essay written by Harland Johnson, a cancer survivor who has used a gastrostomy feeding tube for a patient's viewpoint of the pros and cons for this life-sustaining experience.


"Happy G-tubing: from the Perspective of a Cancer Survivor"
(reprinted with permission from Harland Johnson)

After six years with a G-tube, I feel semi-qualified to give advice, particularly to those who have just had one placed, or are about to. And especially to those who are worried or depressed about the prospect. This message is for those who will or do rely totally or partially on nutrition by means of a G-tube or G-button. It's obviously from a patient perspective and not to be construed as medical advice (i.e. don't sue me or the publishers of this newsletter).

I don't know all of the answers but I have some definite opinions and several "tricks" on living with tube feeding.

And I mean LIVING. My strongest opinion is that unless you have other medical problems, tube feeding should not change or interfere with your lifestyle. It's a minor inconvenience at times, but so is getting up and going to work, so don't be downhearted about the prospect. There are actually some advantages; the greatest one being that tube feeding is a very convenient and relatively worry-free way to maintain your nutrition and hydration, which is especially important if you are facing radiation treatment or further surgery. Or, if for whatever reason you are facing an indefinite duration with a tube, it is essential to your wellbeing.

I can honestly say that after the first period of learning the tricks and getting adapted to the new procedures, the G-tube hasn't had much effect on what I, or my family (wife and teenage daughter), does. We still dine in or out with friends and guests. We travel a lot, both domestically and internationally.

I used to swim in the Gulf of Mexico when we lived on the beach. I exercise and work in the yard. Tube feeding should not interfere with most sports (tackle football or wrestling may be an exception!), with intimacy, and with participation in all of the hobbies and recreational activities that you enjoyed prior to the tube.

Have you ever considered the advantages of tube feeding? I can work on the computer while I feed, or play the piano, or work at my desk (before I retired I would have meetings in my office while I was feeding), or read, or even nap (but you should keep your upper body at least at a thirty degree angle to avoid reflux). I get all of the right vitamins and minerals and calories to keep my weight where it should be, my cholesterol is way down, I get no overdoses of nasty caffeine or chocolate or alcohol, I don't have to worry about grocery shopping, I have my food delivered to my door, and insurance pays for 80% -- what a deal!

In my opinion, the first and biggest step to successful G-tube living is mental: DO NOT consider tube feeding as a medical procedure. It's a shortcut way to get food into your stomach. It's just another way of eating, for goodness sake. It's not a blood transfusion or an IV. It doesn't require any higher level of hygiene than you use for normal eating. The location where the tube penetrates the abdominal wall (the stoma site) is not a sterile site. It needs to be kept reasonably clean and dry to avoid irritation and bumpy tissue growth (called granulation tissue) but you don't need a mask and gloves! And there are creams, ointments, and powders to help with site maintenance. You don't need an IV pole on which to hang your feeding bag (if you feed by gravity). When I travel I carry several "over-the-door" plastic hooks in my feeding supplies backpack to hang over pictures in hotel rooms or at rest stops or to hang from the rear hatch of our minivan. At home I use the same hooks or a handy nail at one or two spots where I typically eat. And if I can't find a place to hang the bag I use my 60-cc syringe to inject the formula into my tube.

The second most important principle is to be self-reliant. Whether you keep your feeding supplies in the kitchen, bedroom or bathroom, look after them yourself. Unless you are physically unable to do so, take care of your own feeding. It's very natural for a spouse to want to help, but it isn't necessary. My wife is a nurse who would and could help if necessary, but I prefer to be independent, and I wouldn't think of getting her involved anymore than I would think of having her spoon-feed me if I were eating "normally." Her typical level of participation is to ask, "Have you eaten supper yet?" when we're sitting in front of the TV. Yes, you will get hungry or not get hungry just as you always have, and sometimes you'll forget it's mealtime.

Plan ahead: If you're going out with friends for dinner, eat ahead of time. If you're going on a shopping trip, throw your backpack and a few extra cans of food in the car just in case you stay beyond mealtimes. Ditto for long distance travel. Take a few extra cans on the plane just in case.

Use humor: If you're dining out with guests, and you've already eaten, you can dominate the conversation (!!) while everyone else has their mouth full. Tell the waiter, "Nothing for me thanks. I'm just here to watch and pay." Or order a glass of wine to have something in front of you, and wet your lips and savor the aroma during the meal. If you're able, sneak tastes from your wife's dish, and discreetly spit it out in a napkin if you can't swallow at all. If you're at a banquet, don't make a big deal out of not eating. Let them serve you. Push the food around if necessary. Whether you tell your tablemates about your feeding habits depends on you and whether anyone notices. You may be surprised how few do.

Join in support or discussion groups to ask questions, exchange ideas and tips. It has become obvious to me that most caregivers do not give new G-tubers adequate instruction, and most physicians are woefully uninformed about the ins and outs of enteral feeding. I rely on the Internet, and can recommend www.G-tube.org as one place for information. It has about 400 participants, mostly parents of small children that are tube fed (and typically have a multitude of other medical problems), but there are many adults on the list also, and you can always learn something from everyone who participates. Another source is the Oley Foundation , which is a support organization for enteral and parenteral feeding. Professionals can find information on ASPEN's website (American Society for Parenteral and Enteral Nutrition)

Finally, consider how wonderful it is that we have the opportunity to continue our lives in an almost-normal fashion because of enteral feeding. The G-tube is simple in concept, and easy to use, and I thank God for this low-tech procedure. The alternative is not nearly as appealing!

-- Harland Johnson, adult G-tuber

faq posted 12/03


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Head and Neck Cancer

Head and Neck Cancer I have head and neck cancer. My doctor is recommending a gastrostomy feeding tube (G-tube). Should I do this? posted 12/03, updated 4/04
Head and Neck Cancer What cookbooks would you suggest for someone who has esophageal cancer? posted 3/06

 


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These questions and answers are intended to be of a general informative nature. Please consult with the Registered Dietitian in your cancer center or your health care provider for nutritional advice that can be individualized to your specific medical condition.

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Phone/Fax: 734/996-9260

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