| | Joined: Mar 2015 Posts: 2 Member | OP  Member
Joined: Mar 2015 Posts: 2 | Hello to all. I guess this isn't the place that we want to be, but who does. I'm from Reidsville, NC and a patient at Wesley Long Cancer Center in Greensboro, NC. I have been diagnosed with tongue base stage III squamous cell carcinoma. I will be having a G tube and port put in this week and will start my rad and chemo the following week. My team at the cancer center has answered a lot of my questions and recommended this site to get a better understanding of what is and will be occurring during and after my treatments. I'm hoping I can get some good data, as I'm sure I will, from all of you who are going through or have been through this cancer. Hope that all of you are doing well, or as well as can be expected throughout your journey with this dreaded disease. | | | | | 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 | Welcome to OCF, Chuck! Im happy you were referred to our site. We are in your corner ready to help you with info and moral support to get you thru the next few months.
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Howdy, Chuck, and welcome. Sorry you have to be here, but here is a great place for information and support. Fire away with your questions, we're you're new family.
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2014 Posts: 66 | Hi Chuck, Getting a port is a good idea. What is a G-tube? Do you have any questions for us?
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
| | | | | Joined: Mar 2015 Posts: 2 Member | | OP Member
Joined: Mar 2015 Posts: 2 | Hi QueenKong, actually PEG is the correct terminology. It is a feeding tube inserted into my stomach. At some point, the doctors feel pretty sure that I won't be able to swallow food very well, if at all.
Chuck59 | | | | | 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 | Hello Chuck. I'm in the pro PEG group , many are not. At some point during radiation you will have great difficulty swallowing and the PEG will save your life. However you must continue to swallow, whatever you can. Custard, eggs, Ensure etc. If the swallowing muscles are not used , we very very quickly forget how to use them. Many here have swallowing issues post treatment.
Hoping you sail through treatments,
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | In Canada, everyone calls it a G tube, but it seems PEG is the commonly used term in the U.S. If you find yourself not able to swallow even Ensure or eggs during treatment, you MUST still diligently do your swallowing exercises, even dry swallows. It is vital to the recovery of one's ability to swallow post treatment.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 72 | The PEG is a G tube that is inserted using an endoscope down the throat. PEG stands for Percutaneous Endoscopic Gastronomy, with the PE being the placement method. Some Gastronomy tubes are placed using interventional radiology. For example, after my husband's mandibalectomy, the flap was too fragile for using an endoscope.
It's very important that the body get the nutrients needed to heal, but swallow as much as possible even through the pain.
Susan | | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Hi Chuck,
Welcome! You found a great source of assistance with many very caring people! I am also a PEG tube supporter and I agree that a PORT is the right way to go. DO NOT be bashful about using that tube, it's there for a reason and nutrition is critical to successful treatment and recovery. Best wishes for successful treatment and everyone here is very helpful and always here for one another!
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Mar 2014 Posts: 286 | Welcome Chuck. My doctors were in the anti-PEG camp, at least for me. But like most things the decision should be a medical one, not whatever you might read on the internet. Doctors make assessments on a range of factors before making decisions about things like PEGs, it shouldn't be considered automatic. I'm glad I avoided one, but I don't think either path is a picnic.
You've found a good site here with some amazing people. I hope your treatment goes smoothly, please let us know how you go.
Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
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