Husband Has Tonsil Cancer

This is my first time doing anything like this - cancer or message board - so please bear with me.  Just wanted to get some words of inspiration from someone who's been there, or maybe still there.

 In January 08, my husband went to the doctor because he was coughing so bad he thought he had cracked a rib.  Chest X-ray was clear, but doc asked how long this lump on his left neck had been there.  We thought it was just an inflamed lymph node from being sick on and off.  Doc gave him a 5 day antibiotic and said to call back if it's not any better when we finished the medication.  No better.  We both quit smoking on January 30.

 He sent us to an ENT, who ordered a blood test for cat scratch disease, did a TB test, and ordered a CT scan.  Cat scratch and TB were neg, and the CT showed a 'necrotic cervical lymph node'.  Then we did a fine needle aspiration, and were referred to a surgeon at the David C. Pratt Cancer Center.  A WHAT center?!  Nooooo, not us.  He had the results of the FNA sent to the surgeon.

 Met the surgeon on March 11, FNA was inconclusive but he did an exam and said he felt it was likely he had squamous cell carcinoma from the tonsil.  So on March 12, we were at the surgery center for a biopsy.  On March 13th, we got the diagnosis.  On March 14th, he underwent another surgery - tonsillectomy and neck dissection.  33 staples from the back of his ear to the middle of his neck. 

It was more involved than we thought, of the 49 lymph nodes that were removed, 15 of them were cancerous.  It has also started to invade the carotid artery.  The surgeon said he was able to get good margins, and felt good that we got it all.  He's at a stage 4.  T1N2b

We are going to a dentist tomorrow to determine what dental work needs to be done.  Then we call to make the appointment with the radiologist for the mask fitting - can't do that until we know how much (if any) swelling there will be to his face.  On Monday we will meet the Oncologist for a consultation.  My poor husband will have to have radiation and chemo. 

How long?  How much?  How often?  I don't know.  My head is still swimming from all of this.  I still can't believe it at times.  We also have a young son, and I'm trying as hard as I can to keep things as 'normal' as possible. 

 It took a week for him to be able to eat halfway solid foods, and he's lost 17 pounds already.  He's getting better and stronger every day, and I'm trying to focus on enjoying the healthy time we have now before treatment starts.

 Does anyone have any advise? 

I recently (5 weeks ago) completed 35 radiation treatments for tonsil cancer. I did not have chemo. The first two weeks are a breeze. The mask is a bit confining and uncomfortable, that bothered me a little. After a couple of weeks the effects start to hit. The throat gets really dry as the glands die out, you get mouth sores that make it very difficult to swallow (I lost 20 lbs). Some people get PEG feeding tubes since they just can't eat. But if he does get one, he MUST continue to swallow water as much as posible to keep that swallowing action going. Taste buds die off so there isn't much taste to things. I recommend Resurgex protein drinks and mix in L-Glutamine to help the mouth sores. If he has gold crowns, make sure the mouth piece is extra thick. The radiation fried my tongue somthing awful! Use all the Biatene products out there. I used Aquaphor for my skin burns. Make sure the machine is an IMRT machine.

But the good news is. Many, Many folks have gone through it succesfully and so will he. It is a rough road, but he can do it!!

Be there for him, keep working on getting protein down him. Use the shakes and water.

Ohh, also I got Ethyol injections before every treatment for side effects. Ask about those.

Don't hesitate to ask other questions on this board.

Good luck and God Bless.

Rick

Hi, Babzilla.

I'm almost 6 months out of treatment for tonsil cancer, stage 4a. I had chemo ( cisplatin) and radiation ( 7 weeks IMRT). Rick covered most of it for radiation. Keep swallowing, keep his weight up, dont worry too much about "healthy"...it's more important right now to maintain weight, he's gonna need all his energy. Stay hydrated, get a PEG tube if eating becomes too difficult. If your husband has chemo, expect some moderate to severe nausea. If the docs dont give him anti nausea drugs, ask for them, same with painkillers.

If you have any questions at all that the docs dont answer, we're all here for you. It's tough getting hit with that "C" word... I thought it was like getting slapped across the face when I was told. BUT....Rick's been there, I've been there, and many others here have been there. You be there for your husband, and we'll be here for you.

Best Wishes..

Mike

Well said Mike. That's the beauty of this board, it's a big help to all of us.

Rick

Thanks so much! 

You guys are great!  My thoughts are with you and your families! 

Did either of you miss a lot of work?  My husband is a Warehouse Manager, a lot of walking but there is office work as well that he can do.  Just didn't know if either of you could give me some sort of idea how sick he's going to get.  Of course everyone is different.  I'm just trying to arm myself with as much information as I can.

I was able to work (desk job) until about half-way through treatment, and then I got deathly ill, vomiting and gagging uncontrollably, thrush, mucus, burned-up throat and skin and I was out of work for about 6-8 weeks. I am not going to lie, I truly thought I was going to die. However, I had external beam radiation AND substandard care. The most important thing to remember is that you must be satisfied with the standard of care he is getting. That will make all the difference, and it is pivotal to minimizing your side effects and ensuring a speedy recovery. Rick has given you some great advice. More than two years later, I still have a PEG tube and I'm not able to do the things I once did. But I'm growing stronger every day and I'm able to enjoy life more. The pain is less, but it is still limiting. I would also recommend an antidepressant/anti-anxiety drug, both for him and you.  Neck cancer is a serious diagnosis, the treatment is tough, and in my opinion, does not get the attention it deserves. Stay strong and don't be afraid to ask plenty of questions. You will be your husband's best advocate.

I really hope you are feeling better soon! 

 So far we are completely satisfied with our team of doctors and how quickly they are moving to help us along.  But I completely agree that it's very important to be comfortable with the doctors and methods of treatment along the way.  A few weeks ago a close friend of mine passed away from a long battle with breast cancer.  There were times that we (her friends) suggested that she get a second opinion. 

 Thanks for your reply, I appreciate all of the advise I can get!  Stay strong!  Sounds like you are a fighter!

My hubbie, a non-smoker, was dx w/ stage 3b hypopharynx w/ lymph node and underwent 2 chemo inductions, 40 rad treatments w/ weekly chemo. He couldn't work at all while in treatment - he also had tonsils removed, wisdom teeth and peg tube prior to the above treatment.

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