| | Joined: Mar 2016 Posts: 1 Member | OP  Member
Joined: Mar 2016 Posts: 1 | HI I had a full glossectomy in December2015. After 2 weeks in hospital i decided not to go with chemo or radiation. I am treating myself. i have a peg in but can swallow and drink liquids, even soup. I am on a strict no sugar diet,withlots of suppliments etc. Doctors say im taking a big risk but icouldnt deal with the thought of the horrible side effects. is anybody else out there in my predicament and should i get the peg removed.
| | | | | 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. Im sorry to hear you have had to go thru a full glossectomy. Thats a very long complicated surgery. For only 2 weeks out, it sounds like you are doing very well.
As Admin, Ive read every single post for the past 6+ years (Ive been here for almost 9 years). In that time Ive seen many members come and go. Some move on and back to their old life before cancer, some stick around to help others and sadly many have passed away. But the phrase "I am treating myself" is one Ive never heard before. Of course eating healthy is the best thing anyone can do, it wont eliminate any remaining cancer cells. I have to say while I admire your tenacity to be your own best advocate, please rethink your decision and listen to your doctors. How about going for a second opinion?
Most patients with feeding tubes hate having it. My doctor advise me that if I could sustain myself for at least one month without using the tube and not losing weight then it could be removed. I would ask for a barium swallow test to ensure you can properly swallow things and you arent aspirating. A tiny amount of liquid going into your lungs will cause problems.
Best wishes with everything!
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 | Hi Mark - sorry to hear about what you've had to go through. You sound like a brave and strong person.
I have to second what Christine wrote. She's extremely knowledgeable about these matters and many people have come to rely on her advice. But I think any of the rest of us would say the same thing about the idea of treating yourself. That is, it's great and courageous in theory, but the docs know what they're doing in these cases.
Also, each of us reacts differently to these therapies. What could create a lot of side effects for one person might well not be as extreme for someone else.
Her advice to get a second opinion is a good one. Why not give it a try and let us know how it turns out?
My thoughts with you.
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: 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 Mark, I am sorry to hear that you have had to have this fairly brutal surgery.
It does sound that you are doing well on the swallowing front. Did you get that swallow test before you left the hospital? Do you cough after swallowing liquids?
My Husband Kris has also had a total Glossectomy , plus a couple of other bits.
He kept his PEG tube in for nearly 4 years, even though he was/is able to swallow all his nutrition. I would be cautious about having it removed too soon. You are not yet out of the woods and in the clear. Be patient.
I also agree with Christine and David. Please listen to your medical team. If they are recommending chemo and radiation then I would do it. What did your Pathology show? Are the margins clear and by how much. Are any lymph nodes involved. Any extra capsular extension. Neural extension. Are you able to get another opinion from another cancer centre?
That said, Kris did not receive any further( note I am saying further) chemo or rads after his salvage surgery. I did ask the team the reason not to follow up with more chemo and radiation and they told me that he had not responded to either of these treatment modalities. His Base of Tongue cancer was initially treated with chemo and rads, but his tumour recurred 10 months later. So, they said, why treat him with treatments that had not worked for him. I understood this logic, but I would have preferred that his surgery was followed by another round of at least radiation.
Have you had previous radiation prior to your surgery?
This is a nasty and aggressive cancer. It needs to be hit hard. You are taking a gamble here. Of course, you are entitled to make this decision for yourself. You must be a brave Man.
Please at least consider that 2nd opinion. I wish you well.
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!
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