During treatment for oral cancer, it’s protocol to get a feeding tube. But, it wasn’t always. I didn’t have a feeding tube. I forced myself to eat, a slow, gruelingly painful process. Every 20 minutes, I’d try to ingest one teaspoon of Cream of Wheat, scrambled eggs, whipped sweet potato, pureed spinach….It’s not easy to eat when you have a bad canker sore, and when your mouth if full of sores, it’s torture.
The down-side of feeding tubes is that patients rely on them too much and relinquish eating by mouth. When the swallowing muscles aren’t used, they atrophy. I’ve been in contact with several survivors who had to relearn how to swallow with swallow therapists. For some, it was a long term challenge. So, which is the worse evil??
Rebecca Dresser, editor of “Malignant,” is a professor of law and medical ethics at Washington University in St. Louis and a survivor of oral cancer. As an ethicist, she has a firm professional commitment to patient autonomy, the doctrine of “it’s your body and you alone decide what happens to it”. As a patient, she got herself into serious trouble wielding that autonomy: Unable to eat or drink, she firmly refused a feeding tube until she almost starved to death. Finally, her caretakers strong-armed her into changing her mind, and she eventually made a full and grateful recovery.
What’s your experience with feeding tubes?
Comments 11
My personal feeling on the feeding tube, it is an insurance policy and a good one. I had a feeding tube placed the first week my treatments began. I lost 70lbs DURING treatment.
Also, if “pain management” is important, why do we insist on putting H&N patients through the grueling, very painful task of no choice (if no feeding tube you have no choice but to swallow to remain nourished).
If a H&N patient reaches the point where they are malnourished and in a weakened, painful state is “then” the time to place the tube better?
I realize each person is different, but many or most H&N patients at some point will have a problem and/or severe pain with swallowing. The tube allows the patient to get the nourishement they need, as needed on their timing. Doctors / nurses can have the patient swallow or take a few bites in their presence as well as have the patient keep a diary of their swallowing fluids / foods and stress the importance of that exercise each visit.
I had my feeding tube placed November 2011 and removed May 2012. I have now lost a total of 85lbs and been able to maintain my weight. Though I still am not able to eat some foods, my ability to swallow is more related to my throat being half it’s size (scarring) more so than anything else.
I pray no one would ever have to join our club, but if they do, I feel strongly a feeding tube is best placed before treatments begin.
Author
Thanks Tim. Your feedback and personal experience is so valuable. We always have to remember that everyone is different, their experience is different(treatment/cancer location) their cancer is different, and their pain threshold is different.
I personally did not have a g-tube. The doctors at the University of Chicago monitored patient’s weight carefully, and, since the University’s protocol involved hospitalization during radiation treatment, it was a simple matter of scheduling an O.R to place the tube if it became necessary. My roommate for the five weeks had his put in during the third week. It took him nearly a year to wean himself off of the tube, because he had allowed his swallowing muscles to atrophy. I would strongly recommend to those who do have a g-tube that they force themselves to continue swallowing at least some liquids, but something with a little more substance to maintain swallowing function.
Getting through radiation without a feeding tube was excruciatingly painful, but being able to swallow relatively normally early in my recovery was instrumental in speeding my recovery.
I was back to work full time ten weeks after completing treatment.
Knowing what I know now, I would do it the same way. No feeding tube unless I am unable to maintain nutrition. After all, the body needs the nutrients to help repair the damage being done by chemo and radiation. Good nutrition is critical to recovery.
Author
Chuck, some survivors don’t know they have a choice! Thanks for commenting.
My vote is for the feeding tube. I was told by my rad oncologist that some of his patients make it through without one; however, most do not. Based on the slight chance that I could manage without one, I was determined to do without. After 3 weeks of radiation, I had hit the wall and required the tube. It was put in by the end of the 4th week and by then it was just impossible to swallow any food whatsoever. I continued a minimal amount of swallowing by virtue of adequate pain control which prevented by throat muscles from completely atrophying – but my throat hasn’t been right since. I insisted to have the tube taken out at the end of 10 weeks. In retrospect, that was probably premature. I went from 154 lbs. down to about 130. Tube or no tube, either way you still need to swallow, but it’s too painful to swallow the amount of nourishment the body needs just to maintain during treatment.
Author
You make the point that it depends where the radiation is hardest targeted. For some, it’s in the throat, for me it was my tongue. So, I don’t think my throat was as hard hit as yours. Thanks for sharing.
I had the feeding tube in since day one, almost 10 months now. I have started to eat more solid foods and I am hoping the Doctors will give the OK to get it out now since I have not used it in almost 1 month. I would not have survived without it since the doctors had to remove my upper teeth because of radiation and my lack of proper dental hygiene. I have lost some weight which is good and now I am at the weight that is right for my body type.
Author
Fred, let me know if you get insurance to cover replacement teeth due to radiation. I’m glad to hear you were able to easily ween yourself off the tube.
I started off with a nasal gastric tube and then progressed to a g tube. I needed mine prior to treatment due to the tumour blocking my throat and was fortunate enough not to need to use it during treatment. My mouth was burnt and sore but no mouth ulcers and was able to eat a very limited diet all throughout treatment. I am glad I had the tube in place because it was comforting to know that if my mouth / throat got worse then I had it there in case I needed it. It took a bit of convincing for them to remove it but eventually it came out and fortunately there has been no need for it since.
Author
Everyone is different. Your story will give others hope that it will be the same for them. Congrats!
i coould not have made it without my tube.i lost 60 lbs with it.i think it should be manitory.i did still swallow,drank warm tea and ate icecream. i cant imagine making it without my tube.its been gone three months now and im eating about anything i want.still struggle some with meat but its not the greatest for you anyway.