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feeding tube for Radiation

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

I will like some opinion about getting or not a feeding tube before ,during or after my radiation.,That i really need it ???.My cancer was a low grade adenocarcinoma in my small salivary gland and was removed by taking partial of my soft posterior palate were was located hardly visible , i am doing great and the recovery was little painful at first but i manage for the past 4 weeks .My ENT and Radiologist want me to wait another week to make sure all the excision is covered with granulated tissues before i start my 4 minutes once a day x 5 weeks radiation .The Therapy will be done with a Trilogy machine and they asure me that i will not loose my taste or suffer from dryness since it will be just directed to the area planned.I personally don't think is necesary the tube for me ,,i will have sores due to the burn as i was told ,,can someone share their opinion ,,beleived or not iam a nurse and iam so afraid of thos tubes, i hear and saw manny staph inf.
Can someone help me ,,is everyone the same when radiation ocurre specially so little minutes.
thanks ,

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I speak as a tonge/neck survivor and the hub of a wife who is an ET nurse. Take what I say with about half a pound of salt, therefore.

In defense of the tube, that particular one, anyway, the G Tube, the Peg Tube, the one inserted into your stomach directly through your torso/abdomen, I can honestly say that I have had no problems at all with staph infections, and I AM familiar with staph infections due to another episode. It DOES create a wound area, in your parlance, that must be tended to, and the longer you have it, the more involved that treatment may become. I have had mine, for example, 'burned' on occasion, with some sort of things that look like long matches. You probably know what they are better than I do. In my case, the pain is modest and worth it.

In your case, I would advise that you avoid the tube unless your doctors indicate it or if you are already in a state of extensive weight loss.

In my experience, surgery can be a very good reason to acquire a tube, as, depending on the location, it can have a significant impact on swallowing. If you have had your surgery and can still eat without a tube, then forget that issue.

The second primary issue is radiation, and you do not yet know how that will impact your ability to swallow, although it seems your docs are indicating it will not be a problem (and your rad sessions, it seems to me, ARE rather brief, based on your description). Rads can cause swelling in the esophagus and elsewhere that may impact your ability to eat, but, again, if the docs are not concerned, I do not think you should be either.

If, on the other hand, they are advising it, they must have reasons, and good ones at that, probably some of the above.

In that case, again, the peg tube, the G tube, is not so tough to deal with. It beats allowing yourself to virtually starve to death. Since you are a nurse, you must be aware that malnutrition is much more serious in the long run than a little wound.

I am sure you and your team will make the right decision.

Take care,

Joe

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

Thank you very much Joe for the reply, it was very helpful to me and as you said it is nice to considerate the g-tube or any kind of feeding devive in situations like this.
I hope i don't have to get to that decision, so far neither of my team mentioned as a must, i was told on my first visit to the pt radiologist by his nurse.
I will keep monitoring my weigh.
Since you have lot of experience on this issues, even that my cancer is very low , local and minimal rad. Can you tell me about in what week i will started to feel those sores, doc said 3 or 4 and i will be 5 weeks in rd pt,, how long for me to heal if you know ?Sorry for all my questions but i am nervouse about it ,,,just a little so far or it is maybe curiosity.
Ty, Roxie

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

if it wasnt that im going backto costa rica to surf and play in the river an summer is coming and i want to swim this year, i wish i could keep mine in i make a shake with Reliv Simplicity meal replacement, plus Reliv Now vitamin, plus whey protein isolate, plus flax seed oil, plus Supreme Foods powdered veggies and fruits, plus freeze dried black razzberries from stokesberry farms, i can eat by mouth but still use my tube to pour my shakes down.
After the first week they loosened it a bit and i never had a problem , i cant imagine how anyone can get enuff food and water in them without it. And believe me the more nutrition and water you can get in you the better you will feel.

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

Thanks Victor ,iknow what you mean by using the peg /tube, yes it is easy if it is not other option, seems like you case.I will hold on mine since my cancer was removed and rad therapy will be minimal strengh.
I am happy for you that you can enkoy Costa Rica, i was there last year and have a blast,the river raft and canopees were amazing ,,i love it !!!.Enjoy Vic since life is only one.
Ah ,,your shakes sound very good ,the ingredients are fantastic.Tell me ???can you eat? are you will be able o eat again by mouth,,how can someone like the tube so much??.
Roxie

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

yes ican eat by mouth but my sweet taste buds are gone (thats a somewhat good thing)
i was a picky eater who had a sweet tooth. So with the tube i can dump down stuff that is good for me and dont have to taste it.All my doctors say they never heard anyone say they loved there feeding tube like me. If not for the fact about swimming which i love i would love to keep it. I dont understand why people dont want it. Meal times are great 15 minutes an no mess to clean.
I have lived in costa rica for 5 years i have a costarican wife i have a few properties down
in the south pacific side around San Isidro de General in the mountains above Dominical beach.

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

Victor you are amazing ,it is very rare to find someone that said ,,i love my feeding tube unless that person really need that device to survive.I am from Cuba and i used to be a speach PT for kids with borning oral disabilities ,no palate ,lips etc , i will like to tell you that no matter how much you like the tube because you can put anything you like through there ,it is very important to excersise you mouth ,jaw and all the organs around there.
I like to eat too and thank god the small piece they removed from my soft palate never interfeer with my eating ,except i feel a little numb in the gum area and because of that can taste very good ,hopping it will go away, i was excited to loose some weight maybe 30 after my surgery but "NADA" i lost 10 and regainned .
Do you going to keep the tube or removed ??.
Costa Rica is great ,beautiful rain forest ,have some friends in Jaco with their second home there and a good friend CR native that we meet in our familly vacation there ,very nice people.Pura Vida!!.
Well, takecare and thanks for replying.I hope to start my 45 weeks rad next monday and get over with it .
Chao, rOXIE

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Your edginess is completely understandable, Roxie. You would probably be considered abnormal if you DIDN'T have any nerves about this.

Your situation and mine are so far removed that I cannot predict when or even if you will have mouth sores. Beyond that, of course, it is a truism but a truth that no two cases are exactly alike.

I had 33 rad tx of between 30-45 minutes daily for seven weeks (I played hooky for two of the originally scheduled 35) and I did indeed develop mouth sores, but do not recall when they came on or how long they lasted.

I know that hydration was essential to getting rid of them, and I encourage you to drink as much as possible (water, Roxie, water!). I also used something called Miracle Wash or some such, which numbed the interior of my mouth and provided at least some relief.

Bear in mind, too, that radiation does not stop when the tx stops. You continue to cook for at least a couple of weeks past the last one, so be patient.

Finally, I used something called Biafene, which you may be familiar with, following every treatment, to help prevent serious burns, and I recommend it, or something like it, highly. (Avoid petroleum-based products in this regard, as they tend to be absorbed by the skin and may do more harm than good.) Alternatives that others swear by include Aquaphor and natural aloe, but the point is to be sure to use SOMETHING post-tx to help you with that potential problem, and to be religious about its application.

As always, of course, consult your doctors before listening to anything we say :).

Best wishes!

Take care,

Joe

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

Well you are right ,no matter if you are in this field and see many cases and treat pt with all kind of deceases.you will still get nervouse as part of human natrure responde.
Just hang up the phone with my Rad PT, since a friend DDS mention to me about possible losing of my 2 back molars? and something called "necroradcrosis" or something like that??,he make me feel very good when told me that ,this is the reason why he wants all the surgical area fill with tissues before started rad ,also told me not to use yet the flouride tx w/ tray till after treatment complete (such i was already started using it ) .I took note of those mouth wash since it can be very helpfull.
Thaks again Joe ,,you really a very good support here.
Roxie

jejrdn
Posts: 28
Joined: Jan 2009

In my opinion I would wait to see how the radiation effects you before making a decision on the feeding tube. In my case I had 6 1/2 weeks of radiation to the left side of my face/sinus area. The doctors told me that I would expect sores and pain by the end of the second week. I didn't get any sores or pain through out the entire treatment. My mouth got a little red from the radiation burns but never got pain or sores. Nor did I feel fatigue during or after the treatments. So in turn I never had to get the feeding tube put in. So it goes to show that everyone's tolerance level is different when receiving radiation treatment. It is good to prepare and know ahead of time the information you need to make a decision when or if the time comes but just see how things go. Also, if you are concerned about it, always ask your doctor. Keep a positive attitude and eat good nutrition as much as you can. Good luck!!!

luckyfl's picture
luckyfl
Posts: 42
Joined: Apr 2009

Thanks jejrdn, i got in mind ,but is always good to hear others opinions and experiences specially in this cases.
I will definatelly wait and it have to be in the worse case for me to make that decision,iam very strong mentally and have good pain control ,i learn that years ago how to manage up to some point also as you said everybody is not the same ,and i hope i am one like you.Just talk to my PT rad and he said that the new machine he will use on me will not affect my jaws bones ,tooth or glands ,the rad will be directed to the small area were the little tumor was and remove so ,let see.
Thanks a million.
Roxie

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