Squamos cell carcinoma

I was diagnosed the first of the year with cancer on the left side of my tongue. I had surgery to remove a T1 tumor in January and had a PET scan and CT with contrast which showed no signs of "hot" spots. A Radiation oncologist assured me that it looked like it was all clean and yet the tumor board recommended radiation. I elected to have more surgery in February and the path report indicated that the margins were clear. I was doing okay until about a month ago when the pain in that area steadily increased to the level of about the day following the second surgery. I get most of the pain into my left ear and my jaw. Sometimes it is a stabbing and searing pain. I returned to the oral surgeon and his recommendation was radiation therapy and another PET scan. I am wondering if anyone has experienced the same type of occurance and has any input. I am not looking forward to radiation. I work in the field and I know of it's side effects. It feels more like an infection, but the ENT doctor I see said no. He indicates that the area around the surgery site (which is a hole about the size of a pea) is getting hard and may be growing another tumor. I have talked to a number of people that know of successfull removal of tongue tumors with no re-occurances. I was hoping for the same, as I assume we all do. Thanks for the help.

 

On 6/7/2009 Steve in Tacoma wrote:

I was diagnosed the first of the year with cancer on the left side of my tongue. I had surgery to remove a T1 tumor in January and had a PET scan and CT with contrast which showed no signs of "hot" spots. A Radiation oncologist assured me that it looked like it was all clean and yet the tumor board recommended radiation. I elected to have more surgery in February and the path report indicated that the margins were clear. I was doing okay until about a month ago when the pain in that area steadily increased to the level of about the day following the second surgery. I get most of the pain into my left ear and my jaw. Sometimes it is a stabbing and searing pain. I returned to the oral surgeon and his recommendation was radiation therapy and another PET scan. I am wondering if anyone has experienced the same type of occurance and has any input. I am not looking forward to radiation. I work in the field and I know of it's side effects. It feels more like an infection, but the ENT doctor I see said no. He indicates that the area around the surgery site (which is a hole about the size of a pea) is getting hard and may be growing another tumor. I have talked to a number of people that know of successfull removal of tongue tumors with no re-occurances. I was hoping for the same, as I assume we all do. Thanks for the help.

We are just starting, so I can't give you any feedback.  I'd be really sorry to hear they did surgery on your tongue (unless it's confined to a small area), as that was Dad's alternative for stage 3 squamous cell cancer of his entire oral tongue.  Luckily the surgeon opted out, and suggested radiation and chemo instead. My Dad just turned 83 and we had his first chemo treatment yesterday.  No apparent side effects.   We begin....no, I don't know why I say "we"....I'm just there, but I care a lot.  At any rate, chemo plus radiation begins Monday 6/15/09, so we have no idea what to expect.  Chemo will be every Monday, with radiation daily.  A PEG (feeding) tube will be inserted shortly....the appointment is Thursday, so I hope they do it then, while he's still healthy.  Since the tumor covers his entire oral tongue, swallowing his meds and any food more difficult than pudding or soup has been difficult. Thank God it's confined and hasn't progressed. A very scary time for us all, and I'll add you to my prayers Steve.

As an aside, I bought him a smaller pair of trousers (expecting some weight loss) for his birthday and told the woman why.  It turned out she was a breast cancer survivior (11 1/2 years) and had a lot to say. She was a perfect (but lovely) stranger, and said she'd pray for my Dad. Am getting the feeling that puts you all in a very special, and very close group.  Will obviously be finding out more, as time and treatments go on.

My Mom is a 10 year breast cancer survivior.

I wish you the very best, and hope you'll contact me for support, as I may contact you also.  God bless...and hope you have a good support system.  Please consider me part of that.  I'd like very much to hear from you, and pray for the best outcome.

Ann Marie 

 

 

Ann Marie,

Thank you for your kind response and my heart goes out to you. I spent some time with the radiation oncologist the other day. He has recommended that I get another PET scan first and, if necessary, another biopsy before we begin radiation therapy. I am already losing wieght, so I would opt for the PEG tube as well. I have what appears to be a good support group, but my wife is in denial at this point. I'll try to bring her around! In the meantime, my GP has started me on an anti-depressant as it is difficult for me not to think of the worst case scenario. I realize I am not alone with that, but we all deal with it in our own way. Please keep in touch and thanks again.

Steve

Ann Marie,

Today is the 15th and it is a bit ironic that your loved one is starting chemo and radiation and I found out that my cancer has spread and into my lung today. I am trying to get into the University of Washington to see their specialist and go from there. I guess I am in for the same.
Steve

Steve and Ann Marie. I am a squamous cell carcinoma of the tongue cancer survivor of almost five years. I was staged at 4 when I was told I had cancer and it had spread to the lymph nodes in my neck. I had surgery where they removed 1/3 of my tongue followed by the removal of 11 teeth, port, and peg tube installed then radiation and chemo. I used the peg tube for my source of nutrition for over 5 months. I just wanted you both to know that there is HOPE out there. It can be a hard process but one that can be accomplished. I have several side effects that I deal with on a daily basis but nothing that a person cannot live with. I suffer with dry mouth and the reoccurence of candidia in the mouth. Hang in there. Stay strong and positive as I believe attitude plays a huge part in this journey. If you would like to chat with me further I can be reached at

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 I am here for support and you are all in my thoughts and prayers.

 Sue

Sue,

I had surgery of my tongue on the 21st of July. The surgeons removed all my lymph nodes and took tissue and veins from my left arm to rebuild the tongue. I am home, but still have the NG tube down my nose and into my stomach for nutrition. I have lost 34 pounds (180 to 146). I still lose about 2 pounds per day and losing strength and energy on a grand level. I am going in on Friday to have a JG tube put in (I understand it is placed into the upper small bowel) and they will remove the one in my nose.I have serious acid reflux that never stops. I also drool non stop and have a large amount of mucous at the back of my throat. I don't sleep much. The worry that I have is that by the time I go for chemo and radiation therapy, I will have lost too much weight already. The team destroyed the veins in my good arm and will have a lot of difficulty in finding one to place an IV. I cannot swallow without pain from the location of the NG tube. How can I stop the mucous? Will it stop once the tube is out? I am feeding myself with cans of Osmolite and cans of Ensure, but with the reflux, I feel overly full all the time like I don't need to eat. My wife has helped me tremendously but had to go back to work today. Oh, since I had to wait 6 weeks to get the surgery, I did have cancer in one of my upper lymph nodes and thus the chemo. I feel like I am not going to make it.

Steve

 

On 8/11/2009 Steve in Tacoma wrote:

Sue,

I had surgery of my tongue on the 21st of July. The surgeons removed all my lymph nodes and took tissue and veins from my left arm to rebuild the tongue. I am home, but still have the NG tube down my nose and into my stomach for nutrition. I have lost 34 pounds (180 to 146). I still lose about 2 pounds per day and losing strength and energy on a grand level. I am going in on Friday to have a JG tube put in (I understand it is placed into the upper small bowel) and they will remove the one in my nose.I have serious acid reflux that never stops. I also drool non stop and have a large amount of mucous at the back of my throat. I don't sleep much. The worry that I have is that by the time I go for chemo and radiation therapy, I will have lost too much weight already. The team destroyed the veins in my good arm and will have a lot of difficulty in finding one to place an IV. I cannot swallow without pain from the location of the NG tube. How can I stop the mucous? Will it stop once the tube is out? I am feeding myself with cans of Osmolite and cans of Ensure, but with the reflux, I feel overly full all the time like I don't need to eat. My wife has helped me tremendously but had to go back to work today. Oh, since I had to wait 6 weeks to get the surgery, I did have cancer in one of my upper lymph nodes and thus the chemo. I feel like I am not going to make it.

Steve

 

Steve:  Hang in, you will make it.  You must get a feeding tube in and begin driping in high calorie cans of liquid to stablize your weight.  At your weight you will need 1500-2000 calories per day.  You can add a liquid anti-acid to control your reflux.  I have had luck with mucous by desolving 8-10 papaya tablets in warm water, filter out the undesolved residule and  gargle with it, should help. I was on the tube for 10 months and I learned that you must maintain your health.  Contact me if if you questions. Good Luck. don

I have had a PEG tube placed and have had nothing but issues. I have been to the ER 4 times for various reasons, mainly that I cannot pass through enough of the cans of liquid food to maintain my weight. I have lost 35 pounds and have not even started radiation therapy or chemo. I had an infection start up on my arm where they removed the tissue to rebuild my tongue. It also feels like my tongue is swollen more. I have just had one can of Osmolite and it feels like I just ate a whole side of beef. I can only manage 4 per day and need 6-7 a day. I am in constant pain at the site where the PEG tube is and it has been a week and a half since it was put in. When does this stop hurting?

Steve

 

On 8/23/2009 Steve in Tacoma wrote:

I have had a PEG tube placed and have had nothing but issues. I have been to the ER 4 times for various reasons, mainly that I cannot pass through enough of the cans of liquid food to maintain my weight. I have lost 35 pounds and have not even started radiation therapy or chemo. I had an infection start up on my arm where they removed the tissue to rebuild my tongue. It also feels like my tongue is swollen more. I have just had one can of Osmolite and it feels like I just ate a whole side of beef. I can only manage 4 per day and need 6-7 a day. I am in constant pain at the site where the PEG tube is and it has been a week and a half since it was put in. When does this stop hurting?

Steve

Steve,

You can do a slow rate 20 to get your body get used to it first. U also need to ask the doctor for the probiotic supplement in your PEG food.  However, to me, it sounded like you have an infection at your PEG location.  Pls ask for the doctor to run some infection test and close it up.  An antibiotic should be consult to keep your body against the odd.

For alternative approach to keep ur weight up in the mean time, pls ask for TPN IV instead.  Without nourishment your body you cant fight Chemo or Radiation. 

Make sure ask for Shingle Shot immediately as you are getting weak due to loosing weight.

Check out this page for all the lung info you need.

http://www.lungcancerclaims.com/

Best wishes,

V