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#145150 - 01/28/12 04:38 PM Odds of needing a PEG during treatment
AvatarMN Offline
Contributing Member (25+ posts)

Registered: 01/28/12
Posts: 26
Loc: Minnesota
I am 36 years old. I've just had surgery to remove a tumor on the side/bottom of my tongue, and three lymph nodes in the same side of my neck. It's a few days yet until I see the cancer team for details on staging and beginning radiation and chemo.

The surgery has left me with no eating complaints other than my tongue doesn't reach very far at this point (they tell me to expect that to change), and I'm unable to lick the outside of my teeth, or roll the side with the incision... this means I prefer to chew as little as possible since food escapes the range of my tongue easily. I'm eating foods like oatmeal, soups, etc. Small pieces that can go down without chewing. And I capture the pieces that stray through swishing with water. I don't have a lot of pain now, 10 days after surgery, except a little with acidy fruits (which they also tell me will improve). [Tangent: Bananas kill worse than anything, even oranges, which I find strange.]

I was curious whether everyone winds up with a PEG feeding tube during treatment? Have any of you ever heard of someone who was able to manage the pain, nausea, and taste issues and swallow enough nutrition normally while they were receiving radiation and chemo, with my kind of cancer? Again, side/bottom of external tongue, and 3 lymph nodes in neck. I lost a very modest amount of tongue, it looks almost the same size as before. And again, I'm only 36.


Edited by AvatarMN (01/28/12 05:10 PM)
_________________________
-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler

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#145155 - 01/28/12 06:18 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 481
Loc: NW Ohio
Hi, Ben,
You have come to the right place for answers. There are a number of folks on this site who have gotten by without a PEG, and I am sure you will hear from them. I had one put in, and was glad to have it, even though I was equally glad to get rid of it. As you go through radiation, you will have more problems with your mouth and eating will become more difficult. If you have chemo, as well, it will be very important to stay nourished, and that is very hard to do. I had a lot less problems after my surgery with eating, than I did after radiation. Listen to your docs and weigh all of your options. Glad you found us, but sorry you had to.
_________________________
Female, nonsmoker, 68, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, looking at a very invasive surgery which will involve lifestyle changes.

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#145156 - 01/28/12 06:20 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1239
Loc: Los Angeles
Ben, welcome to our little band. You've come to the right place for information and support.

I can't speak to the tongue issue. In my case I just had the neck dissection prior to RT and elected not to get a PEG. My RO told me that she thought if I was diligent that I could get through it. Which I did, although it was extremely difficult and if I had it to do over again would assuredly go with a PEG.

As anyone here will tell you, we all respond differently to treatment. So the fact that I developed large and extremely painful mouth lesions starting at about week 2 of RT and continuing until well after it ended is something that you very well might not have to deal with, or at any event not to that degree of severity.

I lost 30 pounds and was never, even with viscous lidocaine, able to get as much liquid nutrition in per day as was advised. I would recommend you think a lot about this and talk to as many people as you can - both in person and here on the board. There are folks who went without a PEG and don't regret the decision. They'll offer a balanced perspective to mine.

For me getting the stuff past the sores in my mouth was really the only issue. The 3 months of continual nausea actually didn't kick in until after the end of RT. And again, that was my own personal reaction.

Either way, best of luck with your treatment. I'm sure you'll do very well, and am glad to read that your tongue resection left you in such good shape.

Keep us posted, and courage!
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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#145159 - 01/28/12 08:17 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Quote:
Have any of you ever heard of someone who was able to manage the pain, nausea, and taste issues and swallow enough nutrition normally while they were receiving radiation and chemo, with my kind of cancer? Again, side/bottom of external tongue, and 3 lymph nodes in neck.

As the song goes

Quote:
C'est moi! C'est moi, I'm forced to admit.
'Tis I, I humbly reply.
That mortal who
These marvels can do,
C'est moi, c'est moi, 'tis I.


But that was the first time with no surgery. Since you can still swallow after the surgery, if it's important to you, you could do it. Especially since you are so young. But your nutrition will soon be all liquid, like Ensure plus. The issue of PEGs used to be hot one (and I was one of the hotheads) because when I joined, there seemed to be a party line that you needed one and should have one. Now there is a balanced viewpoint, acknowledging that many doctors oppose feeding tubes and their patients don't get one. It probably helped that Michael Douglas refused to get one and did just fine. For me, a feeding tube meant the cancer was winning, so I resisted. For others, it was just a practical option. Most of us (myself included) followed our doctors' advice and predilections.
Nobody wanted one as far as I know, although many, (myself included after the surgery when the cancer came back) ended up needing one.
Congratulations on being able to swallow
Charm



Edited by Charm2017 (01/28/12 08:19 PM)
Edit Reason: toned it down
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#145160 - 01/28/12 08:32 PM Re: Odds of needing a PEG during treatment [Re: Charm2017]
AvatarMN Offline
Contributing Member (25+ posts)

Registered: 01/28/12
Posts: 26
Loc: Minnesota
Thanks for the information, guys.

I don't like the description of living with a PEG, but mostly I am physically and emotionally disgusted by the idea of getting a PEG. I don't know if I understand and could explain why I feel like I desperately don't want it. I will do it anyway if and when I find I am unable to swallow proper nutrition, but I want to try to get by without a PEG.

Is that possible? What's the procedure of getting a PEG like? How much risk will I be taking by saying no to the PEG until after I've cried "uncle"? Can they just pop one in the day after I say I can't swallow my nutrition and I need the PEG?


Edited by AvatarMN (01/29/12 01:32 AM)
_________________________
-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler

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#145161 - 01/28/12 09:30 PM Re: Odds of needing a PEG during treatment [Re: AvatarMN]
Richard T. Offline
Contributing Member (25+ posts)

Registered: 11/10/11
Posts: 33
Loc: Rockford IL
Ben;
I actually requested a PEG following my mandibulectomy. I, like you am able to swallow liquids and am not even using my PEG except for medications that I'd rather not taste. The reason that I wanted it was to have a "plan B" for nutrition. Proper and adequate nutrition is very important when one's body is trying to heal and/or, endure chemo or other treatment. The actual procedure of inserting a PEG tube is really very benign. It is usually done under an IV anesthetic of some sort and takes a very short amout of time. While you are in a state of unawareness, the surgeon sticks an endoscope down your mouth into your stomach and points it at the front. In a darkened room, the light can be seen from the outside. This is where the incision is made. Then, the Tube is merely passed into your mouth, and pulled out the hole. There is a small, flexible "mushroom" on the inside that keeps it from coming out all the way and a little rubber keeper that keeps it from sliding back in. Aside from a little tenderness around the site for a couple of days, I felt fine after the surgery. The tube is not noticible. I ususally just tie it in a loose knot to take up the slack so it doesn't hang out from under my shirt. No one notices it. I simply flush it twice daily and that's the only time I really deal with it. When you don't need it any more removal is also quick and done during a regular office visit.
Personally, I wanted it in place in case my ability to eat does become more comprimised. Going in for any kind of procedure when you're weight is already in free-fall definitely adds complications and requires you to play "catch-up".
As others have stated, its a personal choice. I, admittedly, tend toward being a medical maximalist while others lean more towards the minimalist side of the spectrum. For me, PEG tubes have such a low risk and could possibly provide a real nutritional safety net that it was a no-brainer.

Just my $0.02

Be well!
_________________________
2006 SCC T0 N1 M0; 2006 EBRT x 33, chemo x 3; 2010 Extraction 2 molars; 2010 HBOx30; 2011 Dx osteosarcoma of mandible; 12/20/11 mandibulectomy with temp. titanium plate; 1/31/2012 chemo x 4; 9/19/2012 Reconstruction of mandible with graft from hip and bone morphogenic protein

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#145167 - 01/28/12 10:17 PM Re: Odds of needing a PEG during treatment [Re: Richard T.]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
Ben,
I had 3 surgeries on my tongue (if you count the biopsy as one & I do because they were all painful), a neck dissection, radiation and chemo, and I thought eating food during radiation/chemo was the least painful of all. I was fortunate to have very few mouth sores, don't know why except I did what they said with the baking soda, was careful not aggravate any sores I did get with food. So I had a big stash of VHC Carnation and Boost, and did not use any until the last week & still I ate solid food. I probably should have used the supplements during therapy just to make sure I was getting everything I needed in hindsight, but I hardly lost any weight.
I had my worst time in the 10 days (and it was just 10) following treatment, then I used pain meds for the first time, except for post surgery, and I could eat almost nothing in the way of solids.

I did not particularly want what I perceived as the hassle of a PEG, but I certainly would have gotten one if I could not eat.

The odds? I sure don't know the answer to that one. I think I, like Charm, also regarded bypassing the PEG as a way for me to control my treatment. (BTW, Charm, you brightened my day with Sir Lancelot's song--c'est moi! It's the music in me.)

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#145177 - 01/29/12 12:22 AM Re: Odds of needing a PEG during treatment [Re: AnneO]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8182
Loc: PA
This topic has been discussed many times and sometimes even hotly debated. Very simply put, the peg tube is a tool. It will make things much easier when it gets rough to swallow. Of course everyone is different, some sail right thru and others struggle.

There are all kinds of pros and cons to go along with the choice of getting the feeding tube. I have always thought it is so much better to have it and not need it than to need it and have to wait to get one. When a person is dehydrated and malnourished they feel horrible. I really thought I was going to die I felt so bad. If this happens to you and you need an emergency peg tube, it could be a couple days before you get one. Why put yourself thru this suffering? Not one person who got one really wanted to have it (maybe except for Richard).

If you choose to go without one and need one later you may be able to get away with the nasal tube. That is a more temporary solution. It seems to be most the guys who try to go it without the tube but then end up in trouble and end up getting one anyway. It honestly isnt that big a deal. It just makes it a little easier to handle keeping up with your nutrition and hydration.

_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#145183 - 01/29/12 03:17 AM Re: Odds of needing a PEG during treatment [Re: ChristineB]
Richard T. Offline
Contributing Member (25+ posts)

Registered: 11/10/11
Posts: 33
Loc: Rockford IL
Actually Christine, the real allure of the PEG tube, for me are the parlor tricks. If you're pouring anything in, don't start laughing. It will squirt all over the room unless you're really quick on pinching it off. Also, its possible to really cut back on the quality of one's wine selection since you totally bypass the whole tastebud issue. I've never been much of a drinker but I'm glad to save every penny I can wherever possible. Also, when its removed and the site heals, you can convince your son's friends that you were actually born with two bellybuttons. Actually, three in my case since this is my second one. laugh There's always a silver lining.
_________________________
2006 SCC T0 N1 M0; 2006 EBRT x 33, chemo x 3; 2010 Extraction 2 molars; 2010 HBOx30; 2011 Dx osteosarcoma of mandible; 12/20/11 mandibulectomy with temp. titanium plate; 1/31/2012 chemo x 4; 9/19/2012 Reconstruction of mandible with graft from hip and bone morphogenic protein

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#145192 - 01/29/12 05:16 AM Re: Odds of needing a PEG during treatment [Re: Richard T.]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4762
Loc: Toronto canada
Hi here and welcome! Everyone here has their own opinion of pegs - I was told to get one and did - I was told to try it out and test it for when I needed it later - I did and got severely nauseated after the first try. They switched my formula, I tried again, and threw that up, and pretty much gave up. I had the tube for my entire treatment and never used it beyond the two attempts. Like Anne I was very blessed in that I had some mouth sores but for the most part I had no real pain until the last two days of treatment then I took my meds and chugged my ensure. It definitely helps maintain the swallowing reflex if you go the whole way through. So it can be done. It is good to have it just in case because at some point food sucks!!! And unless you're super motivated or have someone pushing you... Eating becomes highly uncomfortable. so the tube can be a reprieve. smile I too had similar surgery - and had one node involved I found semi solid foods for more controllable than mashed potatoes. did they reconstruct you? Hey removed a third of my tongue but I have amazing mobility with it. Good luck! You can do this!!! smile
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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