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surgery and radiation

luvofmylif
Posts: 344
Joined: Sep 2012

Unable to sleep and wondering this....my husband had a 12 hour surgery which included a very extensive transoral laser surgery to remove tumor at BOT and a selective right neck dissection. I know that surgery causes scarring at BOT am am wondering will that cause more problems swallowing post rad/chemo because I know that also will cause scarring. In other words does the fact that he will have had surgery and radiation/chemo decrease his chances of swallowing in the future due to increase in reactive scarring and fibrois?
Also, thank you for all your encouraging responses to my first post. It means so much.

Hard12Find
Posts: 208
Joined: Sep 2012

Well I can relate to the not being able to sleep part, but unfortunately really don't know the answer to your question. One thing the old timers have to say is that treatments affect everyone differently. That being said, it seems important to me to try and continue to swallow things as long as possible throughout treatment.

I was diagnosed on Aug 29th, with a primary tumor on mr right tonsil, and at least two lymph nodes. I suspect there is more, but havnt heard from my actual radiation oncologist. His nurse said it is regionally localized, what ever that means. I have been told that there will be no surgery for me just chemo and radiation.

Please share your name so I don't feel like I am talking with a stranger, but a friend .

I do know this. This disease is full of things to worry about, and very few of the worries do we have even the slightest control over. That being said, your question is very valid, and should be run past your medical professionals. Try to keep a notebook by the bed to write these questions as you get them, then try to let them out of your mind. Have your husbands physician prescribe a sleep aid, as I am sure that most of us have a lot of sleepless nights.
The notebook will help with recording what meds were taken when, as I have at least a dozen different meds for different things.

I don't know your spiritual or religious background, but I know that putting my faith in Jesus, has brought me a lot of peace, in an unpeaceful situation. I also realize that this disease is bigger than any one person can carry on their own, so don't be afraid to ask for help from medical professionals, freinds, family, clergy, and all of your new freinds here.
I whispered a prayer in your behalf, just before I hit send, may his blessings be plentiful and apparent. Hang in there, you are both in for a tough fight. Take care of yourself, and let the blessings begin.......

luvofmylif
Posts: 344
Joined: Sep 2012

My name is Joan and my husband's name is John. Our names both mean the "grace of God" and without his grace we would have nothing. That being said I think besides fear the hardest part of this situation is loss of control. Suddenly one day everything that was normal is gone. It affects your life in everyway possible.

I am fearful of the radiation and chemo. I fear the treatments and the unknown outcomes. I fear watching my husband suffer. But, apparently there is no other choice then this.

Thank you for your blessings and information

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Hi Joan, I had treatment for BOT back in 2004. In 2007, I started having problems swallowing due to an esophageal stricture. I started having dilations every month or so which allowed me to keep on swallowing. Last year, I had mandible surgery. I didn't have any dilations for six months. I found myself not being able to swallow anything. Even the dilations weren't helping. I recently had a swallow test. My swallow therapist told me my hyoid bone was not moving forward to start the swallow mechanism. She said this was probably due to the fibrosis in my neck.

I was about to give up until I read a post by Bigfuzzydoug about chiropractic treatments he went through. He said the chiropractor was able to break up the fibrosis through manipulating his throat with his thumbs. I recently contacted a chiropractor and he told me about treatments called the Graston Technique that will break up fibrosis with strange looking instruments (see Grastontechnique.com). I haven't started these treatments yet but they sound encouraging. My point is, even if John does come down with fibrosis hampering his swallowing, there is hope of breaking it up.

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

So sorry you and John have to be in this place, but you will get the support and answers you need from us all. I had Stage 4 base of tongue. No tongue surgery, but I did have a large lymph node removed, and a later surgery to remove my tonsils and 'biopsy' my tongue. I'm 2 1/3 years out from end of treatment. I do have fibrosis, and I have very little saliva. They had to give me the maximum dose of radiation, owing to extensive involvement of lymph nodes on both sides, and it cooked my salivary glands.

I describe my swallow as "compromised." I can eat pretty much whatever I want. Some things take so much effort that I don't eat a lot of them. I take small bites, chew them well, and I keep water handy to wash down the stuff that sticks. Dry and chewy meats don't work so well. Breads can be problematic, but I do enjoy my favorite sourdough with lots of butter or olive oil. Cheeseburgers I can handle, especially with lots of mayo, onions, tomato and lettuce. All vegetable and fruits taste great and are easy to eat. Desserts are not so appealing. I still can't much taste sugar, and "fluffy" foods (cake) are hard to get down.

Others have said.. 'keep practicing your swallow.' I did that. I had a feeding tube for the last half of my treatment. I don't believe it impaired my swallow, as I drank lukewarm green tea and water through my treatment. I have not had any issues with stricture. I am comfortable eating out in restaurants, although I am careful what I order.

Deb

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

My best advice is not to borrow trouble but to take things as they come and deal with them. You can spend so much time & energy worrying about things that may never come to be. Having said that, I had a 19 hour surgery and had my mandible replace with titanium and the fibula from my leg. I have what I consider very good range of motion in my neck. A touch of lymphedema that I am getting neck massage therapy for and it is helping. My surgeon told me if I ever came to the point of not being able to swallow to call him immediately, that never happened. I had a g-tube which I used a brief while but always continued to drink and swallow. It is a difficult journey but when your husband comes out on the other side with "no evidence of disease" it will be worthwhile. God bless

CivilMatt's picture
CivilMatt
Posts: 3067
Joined: May 2012

luvofmylif,

I had BOT surgery and lateral dissection of the Jugular vein. Base of tongue never felt anything to start with, never felt anything after surgery or today. Neck dissection, numbness in surgery area including lower cheek, some pain, no medications (today a little numb). Swallowing, this site had me so afraid my throat would swell up and I would quit swallowing and have to re-learn to swallow and speak again. I started drinking (lots) of water at the beginning of treatments and continue today (8 glasses today and probably 1 more) and that does not include the coffee I drank today. Anyway I ramble on; my tongue is fine and so is my swallowing (fingers crossed).

Take everything you read here seriously, but pray for a gentle uneventful journey.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

I had so much fear of losing my ability to swallow, that I kept on swallowing something no matter what hurdles were put in front of me. In the beginning, during simutanious radiation and chemo, I had no issues eating/drinking my Boost and Ensure...however during the last half of my treatment, mouth sores plagued me for 3 weeks out of every 4...I swallowed water with L-Glutimine mixed in, just to make sure my swallower worked....

Also, I agree with not borrowing trouble...one of the best pieces of advice I ever got on here came right at the beginning. "Don't fight any battles you aren't facing"....enough energy will be going out taking care of things that are in front of you...so unless a problem is right there at your doorstep, don't waste time on it.

p

luvofmylif
Posts: 344
Joined: Sep 2012

Thanks for all the helpful advice. I am concerned because of all the difficulty he has had even before radiation and chemo. The BOT surgery was 12 hours and extensive. Unable to swallow afterwards for weeks and need a NG for feeding. WAs intubated for 3 days after the surgery also. He is just now getting back on track with eating and now we face chemo and radiation.

But, I know you are all veterans and I appreciate you telling me not to worry about what hasn't happened. I guess it's just I my nature. I heard it said the other day that fear is made worse by the lack of hope. You all help me to have hope and courage.

I never thought alot or knew what people that are diagnosed with this disease go through. You are all brave and strong. My husband is strong and brave also, and I will continue to try and be the same.

Thank you again for sharing your knowledge and caring.

Joan

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