I am a stage 4 tongue cancer survivor

It was a long tough road but it seems as if I have won the battles so far.

Let me start this by saying I smoked from 1972 - 1977 and the Dr's do not think this was an issue.  I am a extremely light drinker.  I drink socially and only a beer or a glass of wine and never more than one.  HPV could be a culprit as I dated more than a few women when I was dealing with my divorce in 1987-88.  It's amazing that it took 20 years to present if that is indeed the cause.  I read that an oncologist wrote we have cancer in our bodies all the time.  It's just a matter of some trigger setting it off.  Stress, sickness of another type, etc.  I had tons of stress in July of 2007.  My wife lost her Dad and 10 days later I lost my Mom.  Her parents live in China and my Mom is in the US (as am I).

September of 2007 - lost taste of food.  I tasted something but it was only half the flavour I expected.  My family Dr said taste issues are in the brain so she ordered a CT of my brain.  No abnormalities.

November 2007 - Still experiencing loss of taste but now have developed a nagging pain under my right ear. - Went to see a Ear, Nose, Throat Dr.  He said it was TMJ and take Ibuprofin.

January 2008 - Went to another ENT Dr who said it could be a nerve in my ear.  He ordered an MRI.  The guy who read it said he thought he saw something on my tongue.

January 2008 - Another MRI of my head and neck this time.  They found something but don't know what it is.

February 2008 - Biopsy confirmed the worst.  Cancer of the tongue.  Stage 3.

Feb 08 - saw a cancer surgeon - he said it was inoperable (too large) as he would have to remove my tongue and my quality of life wouldn't be there.

February 2008 - went to see an oncologist (1st opinion) who was too blunt.  Said he was leaving to teach at University and had said if the cancr is in my lymphnodes I will be dead soon.  Said I should see my dentist for review.

Feb 08 - Dentist, oral surgeon, gum Dr., all said my teeth should come out.  All my teeth!  So I went in to have them all removed surgically. (Insurance doesn't cover this I found out later).

Feb 08 - Surgery to put in the feeding tube and my 'Port-a-Cath' - makes delivery of Chemo easier.  Ordered several cases of liquid food (Insurance doesn't cover the food either).

March - got to see 2nd oncologist they mapped out my course of treatment.  7,000 units of radiation over a 7 week period.  They made my face mask (to hold my head still) and we started on Monday.

Three heavy doses of chemo (cisplatin).  The chemo would be delivered on days 1&2 of weeks 1, 4, and 7.  The dose is so strong they had to give me half at a time, so two days for one dose.

April 08 - we finished treatment.  Now I just have to start feeling better.

August 08 - PET scan shows tongue and neck are clear but now there is a spot on my spine and my lung to be concerned about (turned out it was nothing)

December 12 - PET is clean from the top of my head to my knees.  Yippie!!!!

Side effects - Good - I havn't had to shave my neck for four years now and it's as smooth as a babys bottom.  Lost a bunch of weight.  Kept it off until I had dental implants put in to hold my dentures in place better.   Now I'm heavy again.

Side effects - Tolerable -  When my weight was down I was cold most of the time.  Because of the targeted radiation my neck cramps up when it is cold in the room.  I can't whistle well at all and my singing voice isn't what it used to be.

Side effects - Bad - none.  I'm still here.

There is so much more to this.  feel free to ask questions.

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  • I'm glad to hear that you're doing well and still have your tongue. I am in the same situation you were in only I'm stage 4. They want to remove most of my tongue and some of the lymph nodes in my neck. I did find a cancer center near me that said they would do radiation for seven weeks and three sessions of platinum based chemo at the same time. My question to you is, do you know of anyone else, besides yourself that was successfully treated in this manner? Everything I read and hear says surgery is the best way to eliminate the cancer. However, I've seen people who have had most and all of their tongue removed. I refuse to live that way. Thanks in advance for your help.
  • Hi badgolfer, I had the same diagnosis 11 years ago. the options were a six an half hour op or go home with a supply of morphine. He said I would not be able to talk or eat. I can't eat and my speech leaves a lot to be desired, but I still manage golf, angling and driving my sports car. Life is good and I have enjoyed every minute and hope enjoy a few more years. I am 82 and in not bad shape. I cannot understand when you may have no choice. Colin

  • Hi Colin, Thank you for the reply. So, did you go through with the operation? I wasn't completely sure from your message. The operation they say I should have lasts 10 hours and will remove most of my tongue and the lymph nodes on both sides of my neck. Then they want to follow up with radiation. I have another clinic that is offering Chemo/Radiation at the same time without surgery. I'm just wondering about the sucess rate on that approach. I'm looking for any good alternatives. I don't want to go without a  tongue. Thanks again. 

  • Hi badgolfer, Yes I had the op. They cut through my chin and carried on down the inside of each jawbone. They then went down to the bottom of my neck . this enabled them to get directly to my tongue by opening each side of my jaw sideways. They removed part of my jaw on one side as it was cancerous. Six months before I had spent 2.400 on a bridge so I wasn't best pleased. They took my right pectoral and fed it into my throat to supply blood to my brain as they had in effect cut my throat. I had 6 weeks of daily radiation - twice a day for the last 2 weeks and weekly chemo. I was three weeks in hospital (In France where I live). In England I would probably not have been treated as I was 71. I have a PEG for all my food (I have used it over 10,000 times) and apart from taking an hour three times a day its no problem. Being retired I don't have the problem of having to work. They offered no alternative treatment apart from returning home with a supply of morphine and waiting out the six months left to me. No choice! Oh yes I lost just over half of my tongue. Contented ..Colin
  • Colin, Thank you for the reply. They want to take about 70% of my tongue. Maybe I'm looking at it wrong but I can't imagine life without it. To probably never be able to eat again. To never be able t go out with friends and have a drink and carry on a conversation that people can understand just seems like a very limited life. The pain from my cancer has made it very difficult to eat and I hardly ever speak because it hurts so much. I can't imagine being this way for years. You have experienced what they want to do to me so you have a better insight than I do. My wife said she is good with my decision wither way. I know the radiation/chemo option doesn't have as much success but I'm seriously looking at it. Any additional things you could tell me would be greatly appreciated. Thanks Again, Marv 

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  • Colin, Thank you for the reply. They want to take about 70% of my tongue. Maybe I'm looking at it wrong but I can't imagine life without it. To probably never be able to eat again. To never be able t go out with friends and have a drink and carry on a conversation that people can understand just seems like a very limited life. The pain from my cancer has made it very difficult to eat and I hardly ever speak because it hurts so much. I can't imagine being this way for years. You have experienced what they want to do to me so you have a better insight than I do. My wife said she is good with my decision wither way. I know the radiation/chemo option doesn't have as much success but I'm seriously looking at it. Any additional things you could tell me would be greatly appreciated. Thanks Again, Marv 

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