Really ambivalent about the gastrostomy tube tomorrow

PJ47

Hello survivors, 

I am getting ready to go for a bike ride on this beautiful day before yet another surgery (3rd in 3 mos).  

I am scheduled to have a gastrostomy tube inserted via laproscope tomorrow afternoon and would love some insights/encouragement.  I had TORS surgery 9-4-13 and Left neck dissection also.  My margins on BOT were clear and the surgeon doubled them to make sure, and only the one out of 22 lymph nodes was positive.  T1N1M0 HPV P16+.  I am having TOMO IMRT for 33 days 60GY (or less) at 1.8 fractions on the BOT and both sides of my neck.  No chemo.  

I have read only a few stories where someone made it through without the feeding tube (one was a man named Mike on the TOMO web site)  but it almost makes me want to try it.

Is this foolish?  I just am tired of anesthesia and being cut on and I just got my energy back. Shoulder still droopy, some nerve pain, but I can kayak, zumba, swim, contra dance, and ride my bike which makes me a happy camper and releases needed endorphines.

I guess I am being a whimp, but I really do not want to mess with an area of my body that does not currently hurt and is working properly.

Thoughts, suggestions?  Remember, I am not having chemo and the dose is going to be de-escalated.  If you suggest deferring to the Doctors, 2 said do it and 2 said I probably won't need it.  50/50

Thanks in advance,

PJ

hwt

PJ

Several here did it w/o the tube. It's your call to make...you can start w/o it and can always get it later if you need it.  I know Tracy, for one, had hers added late in tx. My ONC wanted to leave my g-tube in 12 weeks post tx. I chose not to and had no regrets. I guess the upside to waiting is that maybe you won't need one. On the downside, it would be easier to get it in while you physically feel better than to wait until the need arises (which hopefully it won't).

Candi  

CivilMatt

PEG this

PJ,

I agree with Candi’s assessment, you can wait, and it is a simple procedure.  Many times when people wait, they are bordering on hurry-up and “PEG me” so I can get some nutrition.  Having one does make meal time easy (either gravity drip or syringe).  If you chose to go without, you have to prepare yourself for some swallowing and eating discipline (you need lots of calories and nutrition, easily).

Looking back, I had 2 PEG’s and always managed to drink one meal a day, the rest by PEG.  Drinking was a challenge, but gravity drip a couple a cans of Jevity was easy.

 There are a number of full time PEG user’s on the H&N forum which do everything you talk about and more.  Life doesn’t end with a PEG.

Remember, drink lots of water and stay hydrated.

Whatever decision you make, you will make it through this and come out the other side with fewer (more manageable) burdens.

Matt

meaganb

I made it through treatment

I made it through treatment without a peg. I did not have chemo but did get a full dose of Rads. By the end I was on a completely liquid diet, either homemade smoothies or premade Bolthouse smoothies. I had to use liquid lidocaine to numb my mouth then I'd drink the smoothie as quickly as possible & follow up with pain meds. Not the most pleasant time in my life but doable. I lost about 15-20lvs overall but I started a little heavy so my Drs weren't overly concerned. If you don't want to do it then don't. It can always be dond later. Just be aware that you will have to force yourself to eat. Good luck!

Ladylacy

PJ

During my husband's first round of radiation and chemo, we were told that he needed to have a feeding tube inserted.  Simple procedure and easy to remove if not needed.  We certainly were glad it was done before radiation started as radiation closed off the back of his throat, something we didn't know until he had a laryngectomy.  Of course, we knew he couldn't swallow and that something was wrong.  6 weeks after surgery and a swallow test the feeding tube was removed without any problems.  But now, after a second round of radiation he is on a feeding tube for the rest of his life.  That has happened to several that I have read about.

Just remember easier to insert before radiation than during and easy to remove if not needed.  And remember that everyone is different and react differently to treatment.  You may not have any problems and find the feeding tube is not necessary but at least you will be prepared if it is.

Wishing you the best -- Sharon

 

nick770

I got a peg tube too, Mainly

I got a peg tube too, Mainly because I am very thin & I didn't have any extra weight on me. It was a God send and i was able to maintain my weight throught my tx and beyond.

It's a personal choice, I had another freind who didn't get one, but he lost 60lbs!  

Like others said, you NEED to make sure you get properly hydrated and get enough calories during TX. 

 

TracyLynn72

I had to

get one with just SIX treatments of 30 left to go.  I was losing too much weight and could not keep ANYTHING down at that point.  I went 7 days without nutrition because I would vomit it back up...water, soup, smoothies, Ensures...everything.  I was dehydrated and malnourished.  I was TERRIFIED and didn't want to need one, but thank the Lord I had it.  It saved my life.  It was a simple outpatient procedure and I was using it the next day.  24 hours later I felt like a new person!  If you can get by and not have to use it, that is great, I just had no other choice.  

CherieLW

PJ,
 
I was really scared

PJ,

 

I was really scared when my dad had to have a feeding tube put in, but he said it was nothing.  It sounds a lot scarier than it actually is.  No pain, just very minimal discomfort the first day.  Make sure you keep the area clean around the insertion site.  Hang in there.  Praying for you...and for your anxiety to subside.  Dad still has his feeding tube 3 months post treatments and he uses it once a day.  I hope at his next apt they will schedule removal but really, it's no bother to him just nerving at first. 

PJ47

Ladylacy said:

PJ

During my husband's first round of radiation and chemo, we were told that he needed to have a feeding tube inserted.  Simple procedure and easy to remove if not needed.  We certainly were glad it was done before radiation started as radiation closed off the back of his throat, something we didn't know until he had a laryngectomy.  Of course, we knew he couldn't swallow and that something was wrong.  6 weeks after surgery and a swallow test the feeding tube was removed without any problems.  But now, after a second round of radiation he is on a feeding tube for the rest of his life.  That has happened to several that I have read about.

Just remember easier to insert before radiation than during and easy to remove if not needed.  And remember that everyone is different and react differently to treatment.  You may not have any problems and find the feeding tube is not necessary but at least you will be prepared if it is.

Wishing you the best -- Sharon

 

Now that was a serious side efect

Was his throat closed from the swelling due to radiation?  Yikes, I have no tumor at the base of my tongue but I suppose anything can happen?  You are making me lean towards hving it done, whereas I was in an I'll wait and see if I need one after 2-3 weeks.  I am having it done through the abdomen directly with the laproscope and not through the endoscopy tube down the throat so it is more of a surgery with general anesthesia and they said they may use a nasal tube to keep my airway open due to the previous tongue base surgery possibly changing things.  Hoping to get my radiation start date tomorrow also.  Thank you for your reply and wishing you both the best,

PJ 

phrannie51

I was like Nick....

the reason they wanted me to have a PEG before treatment was because I was already very thin.  The procedure is pretty much a wham bam, thank you maam kind of deal, tho....45 minutes from the time they wheeled me into the room till I was waking up.  Cramping for a few days, but that was it.

T (fishmanpa) didn't get a tube till his last day of rads....some never got a tube.  I didn't use my tube one time until adjuvent chemo...so if I'd only had rads, I would have made it without one.

p

Ruben and Jude

Ruben opt'd for the tube

Ruben was given a choice of tube or no tube. The 'experts' didn't want him to get it; the acutal treating physicians advised to get it. He opt'd to get the tube, and thank goodness he did, I have no doubt it was one of the procedures that saved his life. It was a simple outpatient procedure. He had some discomfort for about a week after, but then adjusted.

Better to get on before treatment, then to wait until you need it. And remember, you don't HAVE to use it.

Take care. God Bless.

Jude (and Ruben)

PJ47

Ruben and Jude said:

Ruben opt'd for the tube

Ruben was given a choice of tube or no tube. The 'experts' didn't want him to get it; the acutal treating physicians advised to get it. He opt'd to get the tube, and thank goodness he did, I have no doubt it was one of the procedures that saved his life. It was a simple outpatient procedure. He had some discomfort for about a week after, but then adjusted.

Better to get on before treatment, then to wait until you need it. And remember, you don't HAVE to use it.

Take care. God Bless.

Jude (and Ruben)

Decided to pospone the feeding tube for 2 weeks

Since I do not have my radiation schedule yet (they keep saying they are working on my dosing and plan),  I have decided to wait for 2 more weeks as I will have misery for at least 2 months.  Yeah, no surgery/anesthesia to recover from for 2 more weeks!  The laproscopic procedure is cutting(small cuts) through the abdomen, filling it up with co2 then stitching the stomach secure to the abdominal wall.  It is a bit more cutting and pain than some of the other methods.   I chose not to have it done through the endoscope with the "pull" method as there is about a 10% chance of of the cancer "seeding" in the stomach and that did not sound like a good thing to me.  Anyone ever hear of that?  

I am thin enough and could manage another 10 lbs but do not need to loose it so I guess it is the best course. 

Thank allyall for your suggestions and experiences,

PJ

phrannie51

PJ47 said:

Decided to pospone the feeding tube for 2 weeks

Since I do not have my radiation schedule yet (they keep saying they are working on my dosing and plan),  I have decided to wait for 2 more weeks as I will have misery for at least 2 months.  Yeah, no surgery/anesthesia to recover from for 2 more weeks!  The laproscopic procedure is cutting(small cuts) through the abdomen, filling it up with co2 then stitching the stomach secure to the abdominal wall.  It is a bit more cutting and pain than some of the other methods.   I chose not to have it done through the endoscope with the "pull" method as there is about a 10% chance of of the cancer "seeding" in the stomach and that did not sound like a good thing to me.  Anyone ever hear of that?  

I am thin enough and could manage another 10 lbs but do not need to loose it so I guess it is the best course. 

Thank allyall for your suggestions and experiences,

PJ

That's a new one on me....

nobody ever said anything about "seeding the stomach" to me....and I don't recall anyone on here every mentioning that....

I was 97 lbs when I started treatment, and got down to 81 by the end....weight loss wise....16 lbs....I did pretty darn good....but still ended up WAAAAY skinny.  If you start losing weight quickly once treatment is started, there's nothing saying you can't get the tube then....

p

TracyLynn72

PJ47 said:

Decided to pospone the feeding tube for 2 weeks

Since I do not have my radiation schedule yet (they keep saying they are working on my dosing and plan),  I have decided to wait for 2 more weeks as I will have misery for at least 2 months.  Yeah, no surgery/anesthesia to recover from for 2 more weeks!  The laproscopic procedure is cutting(small cuts) through the abdomen, filling it up with co2 then stitching the stomach secure to the abdominal wall.  It is a bit more cutting and pain than some of the other methods.   I chose not to have it done through the endoscope with the "pull" method as there is about a 10% chance of of the cancer "seeding" in the stomach and that did not sound like a good thing to me.  Anyone ever hear of that?  

I am thin enough and could manage another 10 lbs but do not need to loose it so I guess it is the best course. 

Thank allyall for your suggestions and experiences,

PJ

never

heard of seeding either.  I had lost more weight than they wanted me to and couldn't keep anything down (by mouth) so they decided it was time.  

lorig01

Sounds like we had the same treatment

Hi. I was stage III tonsil and had TORS and neck dissection July 2013.  I had reduced rads to left side and minimal to right side.  The surgeon said I had clear margins and thought I could get away without rads.  This was voted down by cancer board who said since 1 lymph node was involved I should get rads. I was T1N1M0 also said I didn't need chemo either.  I opted for the feeding tube because of the stories from other survivors on this web site. I was about 10 pounds overweight but I had read that survival from cancer was affected by the amount of weight that you loose during treatment and I was afraid of major weight loss. I didn't get my tube until the 3rd week of radiation.  I think I would have died without it. It was a life line.  I didn't have a lot of pain during radiation, (I kept up with my pain meds), but everything tasted horrible and I could not eat. I only drank water by mouth to practice my "swallowing" but even that was torture. The tube allowed me to keep my weight up without having the stress of forcing down food.  I really could not eat for 3 or 4 months. After that I started with liquids and soft foods and now can eat almost everything. I have not  heard about "seeding" and none of the doctors mentioned this to me.  I wonder if it is that easy to "seed" by scrapping the throat then I wonder if cancer could "seed" by eating?    Just a thought. Not sure why threading the tube down would be much different then swallowing a bunch of food??  iF you ask the Dr. this let me know what he says. I am curious. 

 

 

 

lornal

tube or not

I did not get a tube when I went through treatments (3 chemo, 30 rads).  I wasn't even offered one.  I wish I did, as I think I would have recovered faster.  My throat didn't start closing off until last year, and by this summer, I felt much like I did during radiation/chemo - basically dehydrated.  Now, with a feeding tube - I feel so much better - my whole body does. 

PJ47

lorig01 said:

Sounds like we had the same treatment

Hi. I was stage III tonsil and had TORS and neck dissection July 2013.  I had reduced rads to left side and minimal to right side.  The surgeon said I had clear margins and thought I could get away without rads.  This was voted down by cancer board who said since 1 lymph node was involved I should get rads. I was T1N1M0 also said I didn't need chemo either.  I opted for the feeding tube because of the stories from other survivors on this web site. I was about 10 pounds overweight but I had read that survival from cancer was affected by the amount of weight that you loose during treatment and I was afraid of major weight loss. I didn't get my tube until the 3rd week of radiation.  I think I would have died without it. It was a life line.  I didn't have a lot of pain during radiation, (I kept up with my pain meds), but everything tasted horrible and I could not eat. I only drank water by mouth to practice my "swallowing" but even that was torture. The tube allowed me to keep my weight up without having the stress of forcing down food.  I really could not eat for 3 or 4 months. After that I started with liquids and soft foods and now can eat almost everything. I have not  heard about "seeding" and none of the doctors mentioned this to me.  I wonder if it is that easy to "seed" by scrapping the throat then I wonder if cancer could "seed" by eating?    Just a thought. Not sure why threading the tube down would be much different then swallowing a bunch of food??  iF you ask the Dr. this let me know what he says. I am curious. 

 

 

 

Will try to answer the seeding question

My husband asked the same question about eating, and I do not think that happens as the pattern for SCC of head and neck does not normally follow to the stomach area.  It must be that there is some sort of trauma to the tissues in the throat and then cells are transferred down to the lining of the stomach with instruments.  Read the article below if you are interested.

Latest abstract on malignant cell seeding after percutaneous endoscopic gastrostomy in pantiens with oropharyngeal/esophageal cancers was www.ncbi.nlm.nih.gov or Endoscopy, 2013 Jul:45 (7).  I do not think it is a problem most of the time but can happen in the process of getting the instruments used to place the tube back and forth through the throat.  If you have had surgery and clear margins then it should be even more unlikely and it would show up within a few months after radiation.  Did you have your surgery this year or last year?  

Also, I was wondering if they reduced your radiation dose due to you being post op and having clear margins?

Did you have IMRT or TOMO/IMRT?

I start radiation tomorrow, they just called me today and I am scheduled to have the g-tube put in Mon. Nov 18, so I will have had 8 treatments by that time.  I hope I can tolerate it up to then.  I know what no appetite, no taste buds, and extreme pain upon swallowing is like from the surgery (mine was base of tongue) so I will go ahead and get the feeding tuble.

Glad you made it through,

PJ

J.R. and June

lornal said:

tube or not

I did not get a tube when I went through treatments (3 chemo, 30 rads).  I wasn't even offered one.  I wish I did, as I think I would have recovered faster.  My throat didn't start closing off until last year, and by this summer, I felt much like I did during radiation/chemo - basically dehydrated.  Now, with a feeding tube - I feel so much better - my whole body does. 

I vote for the tube

My mom fought kicking and screaming not to have the tube. The doctor would not let her start treatment without one. Boy, am I glad that she did get one, as her mouth is in way too much pain for her to eat. I realize that everyone is different and has different scenarious, but it is better to be safe than sorry.

She is going through 35 treaments of radiation (monday through friday) and then chemo one day a week.

Good luck to you! I am sorry that you have to go through this. My heart aches for everyone who does.....