i really dont know how to ask this. what happens when you lose your voice box. i go for a biospy thursday bec of a nodular on my vocal cord same one . could it be from rad. ? that was the only place the pet lite up please help

It could be from rad but more likely from your continued smoking.

If it is on your voice box, it may result in a total laryngetcomy which means you will have a permanent trach and now breath through your neck only. Voice can be restored through a TEP, electro larynx, Utlra voice if you wear dentures, or esaphageal speech. Some may lose the ability to speak altogether.

I have a TEP. I have a small slit in the back of the trach wall where they put a small prosthesis with a small hole in it. When you cover the hole in your neck, the prosthesis forces the air up the esaphagus and out of your throat and allows you to speak.
Not everyone is a candidate for a TEP. Only your surgeon could answer that.

I do hope you do not have to have this surgery, but you did ask the question and hopefully I answered it. Keep us posted.

Take care,
Eileen

Hi
We've had two visits with two oncologists this week.

At the first visit, Craig made a decision not to get the PEG. This was because the doctor seemed to think it was 50% chance of needing it, plus he insists that Craig must eat something orally anyway to exercise the muscles and avoid excessive scar tissue forming.

However, at the second visit we were told that his diagnosis is now Stage 4a. This seems to be because the right lymph node also now has a hard lump (how long it's been there we don't know) and the left lymph node is 3.5cm. This may change the PEG decision.

Craig is to be treated with radiation daily for 6 weeks and three rounds of chemo which will be administered in hospital taking a couple of days each time. The radiation will now be on both sides of the neck. They have stated they don't want to do surgery unless it is absolutely necessary (including a neck dissection).

He still has a PET scan to go so there could be changes to the treatment plan.

I just want to say thank you for all the supportive comments and information that you giving me. It really helps to know we're not alone in this.

Having radiotherapy to both side of his neck/face will be very very tough.I would advise you to get a PEG fitted, after all you dont have to use it,but believe me you will be very grateful it is there if you do need it,particularly if he cant swallow his medication.

good luck liz

Marina,

The staging as a IV should not be an indication that a Peg is warranted as his Tx would have probably been the same at less than a IV. I was a IV and I decided not to go the Peg route. My RO was like his, kinda 50/50 but deferred to my decision. It was tough but if I had to make my decision today I would still not get the Peg. Whether or not he gets the Peg the most important thing is to keep swallowing.

Hi Marina,

You've got lots of advise here, but I thought I would add my experience.

I had a modified radical neck dissection, followed by 6-1/2 weeks of radiation (5-1/2 weeks on both sides and then 1 week just on the left side where the lymph nodes were involved) with weekly cisplatin and Erbitux.

My RO did not recommend a PEG, advising that if I needed it I could get it put in later. One of his nurses was more insistent that I should get it, but I elected to wait.

Eating became extremely difficult after a short time (I'll say 1-2 weeks, but I don't really recall exactly). I fairly quickly developed a very simple diet that I could tolerate, consisting of an egg-beater omelet and 2 Boost Plus for each meal. I also drank a lot of water between meals. I lost maybe 5 lb total during treatment. I did use a codeine-tylenol mixture daily, as well as the magic mouthwash just before eating the eggs - these helped with the raw throat.

Anyway, that's my story.

Best wishes,

Chris

Hi Marina - we too are awaiting our scan and struggling with the PEG or no PEG... I don't think there are any right or wrong decisions and since there are going to be so many things we can't help/control once this all gets going I'm kind of leaning towards let's do it. If dan doesn't need it - GREAT and I intend to do evertyihng I can for that to be the case, but if he does need it I would rather already have it.

I'm praying for you and think of you often as we begin this journey with our families.

Michelle

Yes it's a tough decision but IF, and I stress the word IF, you can keep him swallowing, then yes he would have the best of both worlds. I didn't have the Peg so I didn't have the choice but it appears that some that do get the Peg seem to use it to their ultimate disadvantage. Believe me it is easy to use that Peg because there were many times I wished I had one but I survived without any swallowing issues so my advice leans towards not getting one.

I had the rads and Erbitux on both sides of my throat and my mouth. Maybe I'm justtoo hardheaded for it to bother me, but I haven't needed a PEG yet. Tomorrow morning at6:30 I have to be in the ready room , LOL , and sceduled for more biopsies at 8:30. Then Friday the rad implants. I do think a PEG would help me if I need it but so far can swallow, altho it's hard at times.

PEG wasn't offered to me either time, and I agree with David that from what I have seen here I'm happy that it wasn't as it forced me to keep eating, keep swallowing. Having said that, we all do what we need to survive. Donna