head and neck cancer stage 4

wboaz said:

Well, my cancer was of the tonsil but I also had a large lymph gland tumor in the neck. I don't remember everything but here is part of an emailI sent a couple years back when the treatment was happening.

"In September I thought I was getting swollen glands in my neck with the germ-balls returning to school. After three weeks I hadn't gotten sick and the glands hadn't gone down. I went in to my PCP and he referred me to an Ear Nose Throat guy who didn't know what it was either but had a CT scan done and then a needle biopsy. Let me tell you, a needle stuck into your neck right next to your jugular vein isn't very comfortable. Anyway, the result wasn't positive for cancer but as I had a 4CM x 2.5 CM mass next to my carotid artery I was referred to a surgeon. The surgeon removed both my tonsils (the most pain ever in my life) and did a dissection of my left nect to remove the lymph glands there. I came back positive for Cancer of the Tonsil. While technicaly Stage 4 my prognosis is pretty good. The other way of classifying this was T-1,L-2,M-0 or 1 tumor and 2 lymph glands as positive.

Anyway, I am now going through radiation treatments to my neck and chest daily, chemo weekly and have had several other little procedures. The radiation has killed all of my taste buds (except some bitter) so everything tastes terrible. That plus my throat being very sore got me to go in and have a G-tube installed on Tuesday so that once the Home health care services folks feel like coming over and bringing me my food I will be able to feed foor and meds directly into my stomach without having to swallow."

My advise a couple years later. Go see your dentist and get a complete cleaning and any outstanding work completed. I haven't lost any teeth through this whole thing but many people do. Let everyone know that you want to save your teeth if possible. Also, get some flouride rinse from your dentist. The stuff they give you to rinse with after a cleaning. Rinse with it after every tooth brushing. Also, get the softest toothbrush you can find and some Biotene toothpaste and mouthwash.

Get your stomach tube put in as soon as possible. I waited until I was several weeks into the treatment as I thought I could swallow past any pain. Pain wasn't the problem, the terrible bitter taste that everything had made it impossible for me to eat food. I lost 20 pounds in 2 weeks.

The radiation will cause a lot of pain. Watch out about the Hydrocodone though, it has a lot of tylenol in it which can damage your liver. Once you start to get close to the maximum dose of 5 grams per day of tylenol ask to switch over to oxycodone (the liquid) you can inject it into your stomach tube and it works very well. It is very addictive though so be prepared to wean yourself off of it at the end (about a month after the radiation ends).

I hope this helps.

BugHunter said:

First thing I would tell you......RELAX. This is what it is but staging in H&N cancer is tumor size related, not the instant death sentence you are fearing. My tumor was 6cm and wrapped around my carotid.(main was Rt tonsil). I had 8 weeks of chemo two weeks off followed by 6.5 weeks of chemo/radiation. I am 14 months post treatment and life is slowly getting back to "normal"

Hope all goes well, let us know!
BILL

soccerfreaks said:

I don't blame you a bit (:)) for being worried. All it takes is an announcement of cancer and we pretty much go into shock, don't we? When you add that Stage IV diagnosis, it is like they turned up the amperage a bit, and rightfully so.

I am a head/neck cancer survivor, one who had a soreness on his tongue that lead to replacement of half the tongue with muscle and tissue from the left arm. That does not mean that this will happen to you.

Often, doctors examine what is happening and decide that they do not need to do all of that. I have met very few people who have gone that whole nine yards. Many times, radiation and/or chemotherapy are determined to be the best course of action, and they work a great deal of the time without major surgery, or doctors wouldn't recommend that course of action.

As alluded to by other respondents, head and neck cancer is NOT a death sentence, although it can be if you do not take it seriously, obviously. On the other hand, the Stage IV designation DOES mean more than tumor size, as I'm sure you've been advised.

In my case, I had the tumor on the tongue, and when they biopsied they found more in the lymph nodes in my neck. Sounds like you are in a similar boat. Mine was Stage III, perhaps because the tumor was just a tad smaller? Who knows? In any event, I OPTED for the removal, because I wanted to be rid of the stuff forever. Today, I am not so sure all of the time that this was the best answer, but most of the time, I am comfortable with it. You can read about my shenanigans on my web page on this site. It will save me (and the world) from listening to me again (:)) and might give you some idea of what may lie ahead.

For sure, you know that you can count on the people in here to provide support. You know, more importantly, that is a beatable thing. There are some challenges, but you are up for them.

I happen to enjoy life and consider the cancer to be an annoyance. It is a great annoyance at times, but an annoyance nonetheless. If I can live through mosquitoes in the summer, I can live through this as well.

You can too!

Take care,

Joe