| | Joined: Jun 2010 Posts: 3 Member | OP  Member
Joined: Jun 2010 Posts: 3 | I'm new to this website and I was wondering if anyone else has undergone "Dilations" after going through treatments for Base of Tongue Cancer. Due to radiation damage, I was unable to eat nor drink anything for a whole year. Thus far, I've had 23 procedures but unfortunately my esophagus keeps trying to close up. I have, however, improved a lot since I am now able to eat some solid foods  They cannot remove my PEG tube until my esophagus stabilizes. Just wondering if anyone else has gone through this. Thanks!
11/06/08 - DX Stage III BOT SCC (1 Lymph Node)
01/14/09 - PEG in
01/19/09 - 03/04/09 - Chemo & RT
06/29/09 - PET Clean
08/26/09 - HBO 30 TX
11/24/09 - Current - Repeated Dilations to widen esophagus
12/16/09 - PET Clean
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hi Elina, and welcome from a Miami native currently living in LA. I've had.... hmmm... I think it's 4 esophogeal dilations at this point, maybe 5. This started a couple of months after the end of my RT in June of '09. At the time the GI doc also found an extensive web growing across my esophogus. He removed it, it grew back, he removed it, it grew back. Think it's gone by now though.
I'm so sorry to read that despite all your stretching you're still having trouble. But you do mention things are improving and that's great!
Here's hoping things continue to get better. It's a big drag I know. I still have trouble swallowing, not sure if and how many more dilations are in my future but I am able to eat and drink semi-normally.
I'll keep my fingers crossed for you.
David 2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 | Elina, welcome to OCF. Im impressed by your signature. Most new members do not make one for a while.
There are a few who have to get this procedure done. I am not one of them but know of one person in particular who has had it done several times over the past few years. It seems to help for a few months at a time.
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: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 |
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Jun 2010 Posts: 3 Member | | OP Member
Joined: Jun 2010 Posts: 3 | Thanks everyone, I'm so happy I found this site. I've learned a lot in just a few days.
My procedures were taking place every week, they once gave me a 3-week break and the esophagus almost closed up completely. But with each procedure, it's been closing up less.
This time around, the doctor has given me a 5-week break so I go back on July 19th. I can't wait to see how my throat reacts after this big break.
Today I was able to eat 5 chicken nuggets, I was so excited!
Elina
11/06/08 - DX Stage III BOT SCC (1 Lymph Node)
01/14/09 - PEG in
01/19/09 - 03/04/09 - Chemo & RT
06/29/09 - PET Clean
08/26/09 - HBO 30 TX
11/24/09 - Current - Repeated Dilations to widen esophagus
12/16/09 - PET Clean
| | | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 97 | Keep it up!
One of my regular early meals was a slab of prime rib the size of my car, easy to swallow ...
Congrats!
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Elina,
First of all welcome. My esophagus needing to be stretched was the only problem I did not endure. It sound slike you are coming along great. I am so glad you found us. I love this place. It is my favorite place to be when I need to support and to help support others on this journey.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Hi Elina,
I am in a similar boat. I have not eaten in 2.5 years. I can sip a little bit of fluid but not very much or very well. The stretches should taper off for you. I just reached a point were my doc says call me cause there is no need to schedule. It appears fairly stable to him at about 10mm diameter. I start VitalStim next week, wish me luck. I understand that the stretching can go as long as 6 months. That is something to look forward to for sure. Best of luck with your recovery.
mark
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | those scopes to stretch are a part of myt life since 1996 but not as often as yours are. Every 3 months has been it since that date. I wish you well and welcome you to our family.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | tell me they put you under to do that? if not doesn't it hurt?
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Elina! I have problems swallowing but never had to have any dilations. YEAH for eating 5 chicken nuggets, it's progress and progress is good!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jun 2010 Posts: 3 Member | | OP Member
Joined: Jun 2010 Posts: 3 | Yes, they definitely put you under for these procedures. Most of the time I feel no pain afterwards and I am able to eat that same day.
11/06/08 - DX Stage III BOT SCC (1 Lymph Node)
01/14/09 - PEG in
01/19/09 - 03/04/09 - Chemo & RT
06/29/09 - PET Clean
08/26/09 - HBO 30 TX
11/24/09 - Current - Repeated Dilations to widen esophagus
12/16/09 - PET Clean
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