| | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I have a question about the removal of my PEG. I'm only two weeks post radiation, so it won't be any time very soon, but hoping sooner than later. I don't think I can handle just letting the dr pull it out of my stomach, so he said he will surgically remove while I'm knocked out. IF and it's a big IF I am ready on the 20th of November, he wants to take it out though my mouth bec I'm leaving out of state on the 23rd and he wants to avoid infection, if any. He says the worse ill have is a sore throat. Does anyone have experience with this, or an opinion? Honestly, I don't have a lot of faith in this dr, but he put it in and the office I go to thru my HMO says he should take it out. I know it's up to me, to risk infection or a sore throat, but part of me thinks he's more nervous about which way to go then I am! I had pblms when he inserted it bec it was too tight. (And he put the flange in upside down, which i guess is no big deal, but...) A week later I was dropping my son off at college in Indiana, had terrible pain and after a failed attempt to fix it in the emergency room, I drove to Chicago and my bro in law who is an emergency room dr, fixed it right there in his kitchen. Crazy.
I know it's my decision, but would love some feedback.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Nancy, PEG removal is really a very simple procedure.
Deflate the ballon and pull out. It's all over in 30 seconds. Why would your doc want to remove this through your mouth? I can't fathom that one.
I remove Kris's PEG every 3 months - then put a new one straight back in.
When Kris had his original PEG ( inserted 3 years ago ) removed he was booked in to the operating room. But all they did was deflate the balloon and tug it on out. No sedation given or necessary.
Try not to stress about this. I'm sure others will chime in and reiterate my thoughts.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | I had mine pulled 2 weeks ago and endured a brief burning sensation (30 seconds) and then felt like I took a punch. That lasted for 20 minutes. Having it out made that very tolerable. I refused to go back to the flake that installed and my MO took care of it. Either way you will have some pain but tolerable pulled.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Having a PEG removed thru the mouth is something Ive never heard of on the forum. Everybody else just braces themselves and then YANK. You can do this!!! Im the biggest wimp with pain there is and I was able to handle it. You hurt for maybe 30 seconds then its over and you feel instantly better. This procedure is not worth going under anesthesia for. I cant imagine the doc doing it thru the mouth, especially after what you have been thru with rads. There is no rush to get the tube out, until you can sustain yourself for at least one month without using it, then dont even consider taking it out.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr 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 xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Oct 2008 Posts: 247 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 247 Likes: 1 | It does not make any sense to surgically remove something that can be simply deflated and puled out. What about the risks of general anesthesia?
Frankly, I would question this physician's judgement.
In addition, as Christine said, there is no rush to remove it. If there is no problem with the tube, our RO recommended waiting until first clear scan, or at least until diet, weight, & strength were stable.
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Yeah the whole mouth thing didn't make sense. But in my dr's defense I wanted it surgically removed. I wanted to have it surgically removed bec I'm a wreck over having it pulled out, especially by him. I don't see why they can't give me a shot to numb the area first????? This stupid procedure is taking over my thought life. Easy enough to day don't let it, but sadly it is  embarrassing but true I'm on anxiety meds bec of it. On a happier note, I really feel I have less mucous today than yesterday. I always like to leave my worries with at least one silver lining
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Take some pain reliever prior to going for the removal.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr 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 xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 |
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | By the time you have shots to the area...the PEG will be out and the pain will be subsiding.
Honestly, it is over in about 30 seconds!
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I think I'm convinced. Thing is my dr never mentioned shots, or numbing. I also think I should see if there is another dr I can go to through my HMO to get it removed. Many thanks.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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