Hello, My name is Keith. I am 38 years old and have experienced a recurrance of SCC in my tongue. I recently had surgery where about 1/2 of my tongue was removed and then reconstucted, along with a neck disection. I will be starting radiation within the next couple of weeks. No chemo.

I am looking for opinions about whether or not to have a feeding tube put in my stomach or not. I lost about 30 pounds recuperating from my surgery and have gained about 10 back. I would appreciate any insight.

Hi Keith,

I'm probably the least qualified to respond to you because my husband's diagnosis is so new that we are still in the treatment planning phases. His radiation and chemo will likely start on the 15th of this month.

I can tell you, though, what our radiation oncologist said...in my husband's situation, they said they could put it in at any time and that they wanted to hold off as long as possible so that he retains his ability to swallow. Even if the swallowing is a liquid diet.

So, there not putting a feeding tube in right away, but they are not ruling it out.

Your situation might be different because you already lost quite a bit of weight. My husband is 6 feet and 190 pounds, so they think he is at a good starting point. I hope this helps a little.

Margaret

Hello Keith

I responded to this question on the general board forum and sent you an E-mail.

Please tell us a little about your reccurrence. If you are only 38 when did you get your first "C" and what was your DX & TX?

Were you a smoker/drinker like me? Was HPV involved. You could help many here by sharing your journey.

The reccurrence has me wondering as I'm 50 and just had a half-glossectomy and I am soon to start IMRT shortly.

I hope my information helped you. Good Luck in your TX. Petey

PS: If they put in the "PEG" after you start rad TX it "MAY" delay your treatment for a few days. I have only read this, no experiance with it.
The reason it could delay is that the reason they are putting it in is because you were not staying hydrated and getting the needed nutrients and you could need a few days to heal and a few more to get your body up to a good "fighting weight".

It's hard to say but if you have already lost 30 with just 10 gained back I would definately consider it. They told me that I could have it put in if I needed it later but there were possibilities of higher risk of infection and I noticed that I would have already been in pretty rough shape had I had to have it. There is also the possibility of having to hold up on treatments for a couple of days if I had to have one put in during treatment. I made it through but I also had chemo and that was what really caused me the most problems early on. I started tx at about 195 after being at 210 before the surgeries. By the time it was all over I was 35 lbs lighter. In hindsight if I were in your situation and was starting out 20lbs light I would really consider it. Also you don't have to use it. You can swallow as long as you want or can and only use it for have to situations. Talk to your doc and my experience was the hardest thing about all of this was keeping my weight and nutrition at a healthy level. Good Luck

Hi Keith,

After revieiwing the responses in both of the section s you posted this question, I am going back to my oncologist to question why he is not recommending putting the tube in at the beginning of treatment. The postings you received seem more pro than con. Thank you for raising the question, I am learning a lot of things to ask from this forum.

Good luck with your decision and your treatment.

Kindest regards,

Margaret

Robin was never offered a PEG before treatment,and when he started we never invisaged that he would need one because he bounced back so easily from his surgery.By day 15 Robin hadn't eaten for 14 days and hadnt been able to drink any water or anything else for a week.He lost huge amounts of weight and by the time he was admitted to have a PEG fitted he was very ill.I was angry because being a member of this forum i had realised that this could have been avoided if his PEG had been in place before tx started.As Rob had both sides of his tongue,both sides of his neck,and the floor of his mouth irradiated it seems in hindsight that he would ,almost certainly have eating and drinking issues but i realised that some hospitals dont offer this as a matter of course.