I am two weeks out after surgery. Had part of my tongue taken and reconstructed. Have healed rather rapidly considering. My trach is out now and swallowing well. Still have some swelling but seems to be coming down - not as fast as I would like but going the right direction. I have a peg which will be removed next week. All of my lymph glands were clear except one which they say is encapsulated and they may want to use radiation on it. My question is - is there an alternative to radiation?

Welcome to OCF! You have come to the best place to get info and support for oral cancer.

The only scientifically proven ways to eliminate oral cancer are either surgery and radiation with or without chemo. That's it, nothing else will work. Radiation is no walk in the park for this type of cancer but it is doable. We will help you get thru whatever you are facing.

Best wishes!

Hi Blair, sounds like all is going rather well.
Listen to Christine. Oral cancer is an aggressive beast. Hit it with the works first time and that means radiation when your team recommends it. Especially as you already have spread to a Lymph node - which makes it a stage 4.
You do not want to have any regrets at a later time. Please do not consider any non medical alternative treatments. This is your life you are talking about.
Radiation is doable and many here will help you through.
One other thing - I would keep the PEG in situ if you are going to have radiation treatment.
Tammy

Hi Blair

Its best to leave the peg in if you are going to have Radiation Treatments. My mom is in her second week after completing her radiation and the peg is being used everyday.

I'm going to third all that has been said... do rads and chemo if it's recommended (and it should)

Welcome and ditto to what the others have said. Listen to the doctors first, and use the internet (including us) to help you understand the torrent of information that you are confronted with. A lot of the concepts are pretty foreign until you have to face them first hand. Best wishes for your treatment.

Hi, Like you I have had surgery, base of tongue 1 cm mass and lymph nodes removed. Only 1 positive, but it was large and they are recommending less intense rads, only 1 side of neck, no chemo. I am 3 weeks out of surgery will probably start rads in a couple of weeks. I don't want to have recurrence, so I guess this is what I have to do.

Hiyah mate. I had the same as you. And it was found in two of my lymph nodes.

I had 30 sessions of radiotherapy.

Yes, radiotherapy IS awful - but it could SAVE YOUR LIFE.

I had surgery last December, radio this February March. I attended my graduation ceremony today BSc(Hons) Nursing Practice, and I am going back to work this Wednesday. You can and you will get through it. I did.

I am VERY glad I went through, yes even fought through the radiotherapy, because it is our LIVES we are fighting for.

I would not like to be sitting here now thinking "I wish I'd had it... what if?" - because you'll never manage to shake those thoughts. Cancer haunts your mind as it is....

You will need that PEG, because your mouth will be sore. I had my PEG for 16 weeks (6 weeks during radio and 10 weeks after).

Get ready for a fight, my friend, but it's a brave and important fight that you WILL WIN - you will beat radiotherapy and come out the other side with an improved chance of survival!

Sent with my very best hugs and compassion to you, and all of us with this dreadful illness.

If they recommend it, do it.

I am looking at Proton radiation at MDanderson which is less evasive. Has anyone had this?

I completed 25 Proton Therapy treatments, 50Gy, in January. Compared to IMRT, it was easier, entry point may he higher than IMRT, and beams stay in the tumor, so there is no exit wounds like loss if hair in the nape of the neck, but it takes takes longer to set up, position. For the two locations in the cervical neck it took 30-45 minutes vs 17 zaps with IMRT in 17 minutes, but you don't hear anything with PT like IMRT, and the proton beams itself takes a minute. I went to ProCure in NJ that has 4 machines, 2 flat beam, incline beam, and the large Gantry, but only one machine can be use the proton beams at a time from the cycletron. I believe MDAnderson has IMPT, Intenisty Modulated Proton Therapy, aka Pencil Beam, which is even more direct than other PT, with no need to change positions, brass snubs. Mine had to be changed twice, as well as the table position, although it's robotic.

I made a post with Proton Therapy in the currently treatment section that has some information, links.

I hope this helps.

Given that the various PT machines are designed to be more precise, have you heard of it being used to treat small distant mets? It seems like the cases where mets to lung and such showing up as small (< .5cm) nodules could be blasted away with pinpoint PT beams.

Mine was for a local regional recurrence on the carotid artery, actually the two stubs left that had microscopic cancer, but I haven't heard about the lungs, but I never looked into that. They sometimes do radio-static radio-surgery in the lungs, Cyberknife, so possibly.

IMPT was designed to treat hard to reach tumors like brain where surgery is not a viable option but Paul is our site's expert on this topic.

Thanks David, but hardly an expert lol. I did look briefly into it, and Protons may be able to be used in lung cancer. I guess they will find more areas as time goes on. I think MDAnderson is the only facility with IMPT, right now, which is the programming capability like dose painting in IMRT.

I ended up doing radiation as it is local and only have to do mainly right side. Into my second week with no effects yet. Tongue is now almost back to normal size and have no problem eating or swallowing. Am told I may lose my taste for away but have been told I didn't have any taste to begin with as I drank Bud Light!

As I heal fast and have a high pain level they say I should not have any problems with this. I was two weeks ahead of recovery after surgery. Have to admit this was a little tougher than my open heart 13 years ago but still not real bad.

You're doing fine Blair, still keeping up that sassy, upbeat attitude. It will help you nicely face the upcoming onslaught of rads treatment.

I'm 7 months post rads myself and things are all getting better, albeit slowly. There are plenty of threads in Currently in Treatment to tell you what you will experience and how good or how bad it can be. So there's no reason to fear or worry about the unknown ahead of you over the next 6 or so weeks.

If you haven't started daily use of Aquaphor (or equivalent) on your skin, get that started. It really does help prevent the skin burns on your neck. And I hope you have a prescription for oral lidocaine or one of the other magic mouthwash formulas, these will help you with the mouth/throat related discomfort many of us face, particularly while eating.

Other than that, stay active, pursue your hobbies and interests if possible, including the physical interests such as dancing, walking, running, etc.

The last thing you want to do is to stay home, inactive, thinking that your treatment or disease necessitates it. That just gives you way too much time to start worrying about stuff, and worrying is pretty much the last thing you need to be doing.

You are and will continue to do fine, it won't always be easy, but it is entirely doable.

keep us informed of what you're doing and going through, you matter to all of us.

take care,
Tony

Glad to hear you are handling rads so well. Some lucky few sail right thru it without many of the side effects. Those are the ones who pushed with their intake to get 48-64 oz of water and 2500+ calories in every single day. Thats what will make it easier.

Your sense of taste will probably begin to change in week 3 or 4. Even if things taste bad you still must take in 2500+ calories daily. A few weeks after rads is over your taste will slowly begin to return.

Love your sense of humor! Hang onto that as things change during your treatments. Watch out for crowds during treatment and recovery. You may not feel it yet but your immune system is struggling right now and you are much more susceptible to getting sick than you were pre-cancer.

I resent you a message with an important link. Please take some time to review it and add a signature. It really is important! It will help us to help you when you ask questions.

Thanks!

Like the Bud Light comment which I have to agree with BTW. lol

Now into my 5th week of radiation. Hasn't been bad so far. Lost taste last week which su--- but I will survive. My radiologist has a new mouth wash that takes all pain way if you use it 6 times aday. Great stuff. Can still eat and swallow fine and haven't lost any weight. With only a week and a half to go I think I will make it fine. Still playing golf but have lost some energy. Everything is clear so hopefully we got this early enough.

I do believe though you have to be in the right state of mind to go through this without a lot of problems.

Keep up the good work!!!

Whats the name of the mouthwash?

Let's hope you are one of the few that manages to breeze through this Tx but this is around the time that most of us start to really feel the impact of the accumulation of radiation and chemo. It would be most helpful if you added a Signature Line so we know the whole picture. Good luck.

Hi Blair - your case is very similar to mine in the side effects area. I too had very few during treatment; in fact it amazed the RO. He said he had never seen anyone have so few. Finally in weeks 6 and 7 the mucositis became pretty uncomfortable and later the ropey mucous arrived for a mid length visit.

My go-too mouthwash for pain was oral lidocaine; is that what you are using?

I am 6 months post treatment now and besides my taste for food still being screwed up and sinus drainage that wants to stick in the throat I have no other side effects.

It's good to see you are getting through this as well as you are. Keep writing about it, as it gives hope the new guys that follow in your footsteps

Tony

Christine,

The oral rinse is called MuGard. It takes a prescription but it really works well. My radiologist is sold on it and claim most patients can cut way back on any pain killers. I find it great and only have taken a half pain pill at night occasionally.

I haven't had the mucus problem yet and only have a week and half to go. The oral rinse is MuGard and is great. My radiologist swears by it now and has all of his patients on it. Use it 6 times a day and for me it worked wonders, no pain and very little discomfort. Sorry to hear it takes that long to get taste straightened out. I sure miss a good steak and a good beer.

As your doctor, mine is amassed at my progress and attitude. I am way ahead of where they thought I would be now.

Blair lets hope you are one of the few that breezes thru this Tx. We don't see it that often but it does happen so make me proud...:)

Blair,
Glad the MuGard works. When started early it seems to work quite well for many.