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Looking for people who understand

murry
Posts: 2
Joined: Jun 2003

Hi. I am so glad that I found this website. I've thought for a while that it would help me cope being connected with people who have the same illness. I am 23 and I was diagnosed with stage 3 lateral border tongue cancer in nov 02. I have a short smoking history 4 yrs. I went to my dentist twice with a lesion and he said there was no way that it was cancer. Next I went to my family doctor who also said that he didn't think that it was anything to worry about. Three months later I went to my campus doctor and he refferred me to an oral surgeon. The oral surgeon told me to come back in 2 months if the lesion had not healed but he'd bet his car that it was not cancerous. (I never got the car). :) Finally at the time of diagnosis I had the cancer growing on my tongue for 7 mo. I had surgery: 30% of my tongue removed, a lymh node resection a muscle flap removed from my left shoulder which was the donor for my new tongue. Two of my lymph nodes tested positive for cancer and there was extracapsular spread (meaning the cancer grew outside of the nodes. I had a feeding tube in my nose after surgery. During radiation I was unable to eat due to mouth sores. My diet consisted of 3 ensures a day for about 3 months. My last of radiation was March 19th I had to drop out of nursing school for the semester but other than that my life is normal now. For anyone who is going through head and neck radiation, its very hard, but with the right pain medication it is bearable and it is possible to feel normal again and eat steak!! Right now Im just scared. I feel like my life is just beginning and I have researched that there is only a 30% chance that I will make it to my five year checkup disease free. The hardest part is not knowing the future. Im just wanting to talk to anyone who feels the same - Mary

hyler1
Posts: 12
Joined: Feb 2001

Hi Mary,
I was diagnosed with stage III squamous cell carcinoma after surgery for a lump in my neck that the ENT doctor AND the otolaryngologist was convinced a brachial cleft cyst. After all, the needle biopsy came back negative and the ENT said to me, "Now don't you feel better knowing it's not cancer"! When I went back to have the stitches in my neck removed the doctor had not even looked at the pathology report. Thank the Lord for pointing that out to him before I left his office that day. So I had to go back the next week for more surgery to try and locate the primary tumor. That was worse than the original surgery but they did find that the primary was in my left tonsil so they knew where to concentrate the radiation. I also did a lot of research and was terrified to know that there was a 75% chance the cancer could come back. That was almost 3 years ago and I'm doing great. The thing you need to remember is that statistics are for those in the past and a lot of advances have been made in recent years. And you are in the 30% that will make it anyway! You're young and the odds are in your favor. Try to keep a positive attitude and take each day at a time.

cardan
Posts: 5
Joined: Jun 2003

I totally understand...I'm only 6 months out from radiation hell and life is finally getting back together. Altho' physically I still have some issues--just knowing I'm alive is good enough for me..the other things will come back soon enough. Just keep smiling .... cardan

mayfly
Posts: 7
Joined: Mar 2002

Just saw your message. I live in Canada and was diagnosed in February 2002 with Basoloid Carcinoma of the base of the tongue. Stage 111 poorly differentiated. a rare form of tongue cancer and one that is very aggressive. They removed 2/3 of the base did the flap from the forearma and removed lymph nodes. Radiation to the area was completed 7/23. Everything ok now .. can eat anything. neck a liitle tight from scar tissue and lymphdema. Am blessed. Five year survival rate 50/50. of course I will be in the survival side. keep positive.. you'll make it.

Anytime you want to chat. just e-mail Michael

edcsdc
Posts: 3
Joined: Jul 2003

Hi I to have had treatment for base of tongue and lymh both sides finished treatment 5 months still haveing a lot of trouble eating am chocking when I try to swollow any kind of lumpy food even bread am worried have been told it is gone but have to have MRI next week to see if reason I can not eat and am still getting horse voice did you have any of that or any one else where did you get your researche results can not get any information
edcsdc

mosbutler
Posts: 6
Joined: Feb 2004

My husband had base of tongue cancer squamous cell and is post chemo and radition 6 weeks tomorrow. He also cannot eat. He has a feeding tube. The Rad. Onc. feels he should be eating now, but he is still very sore on the right side of his mouth. When he does try to eat everything tastes bitter.
Good luck with the MRI
Maureen

fallows
Posts: 4
Joined: Feb 2004

I finished radiation the first week of December. It is now the first week in February and I am still having trouble eating. I can eat pasta, noodles, pudding, eggs and other very soft foods. They put me back on steroids two weeks ago and that has helped with the swelling, sorness and made it a little easier to swallow. I still am using my stomach tube for supplement feedings, prosure, and mediations. It is going very, very slowly. Taste is slowly getting better, the radiologist has me takining zinc three time a day to expediete that.

mosbutler
Posts: 6
Joined: Feb 2004

Thanks Fallows. I read this to my husband and it helps to see that he is not alone.
Now for the neck disection!!

earlyquit
Posts: 3
Joined: Mar 2003

Would like to talk with anyone going through or who has gone through tongue cancer. I'm 9 years out and going through plastic surgery now. Ups and downs never go away. Down bad right now. Just need to talk with someone that's been there.

sajjad
Posts: 8
Joined: Jun 2003

Hi, you are too young to worry about statistics & percentages, so stop thinking. I was diagnosed with stage III larynx cancer, went thru the torture of chemo & radiation, starting in June'2000, and here I am, almost alright, and I am 57 now. I do not think of chances, or % of survival, and I take every day as the sun rises. Life is not too bad, except for people who keep on worrying about me and my cancer.
Write to me how you are now, and if you have any questions, at sajjad_h@bdonline.com
God Bless you.

sajjad
Posts: 8
Joined: Jun 2003

Hi, you are too young to worry about statistics & percentages, so stop thinking. I was diagnosed with stage III larynx cancer, went thru the torture of chemo & radiation, starting in June'2000, and here I am, almost alright, and I am 57 now. I do not think of chances, or % of survival, and I take every day as the sun rises. Life is not too bad, except for people who keep on worrying about me and my cancer.
Write to me how you are now, and if you have any questions, at sajjad_h@bdonline.com
God Bless you.

slacker99
Posts: 2
Joined: Aug 2003

Oh my gosh! I am 21 and I had a lesion omy left lateral tongue. I never thought I would talk to someone my ag ewho would understand what I am going through. I had 1/3 of my tongue removed and had internal radiation implants and I am trying to return to a normal life of college, kids, and work. I understand, I never thought I could connect with someone who could understand me. As much as my friends and family have helped me they will never "understand" what I have been through. I would like to hear what you have to say. How do you go back to "normal"? How do you live with the fear and anger and all the other emotions that all of sudden are part of your life? I'm not really doing very well with it. Amanda

oodeloo524
Posts: 3
Joined: Jul 2004

Your story sounds almost exaclty like mine, except I'm 20 and have never smoked. In Nov. '03 I began complaining about my braces to my orthodontis. I thought that it was causing the lesion on my tongue which would cut open at least once a day, quite annoying and painful. He brushed it off for a few months. I went to see my regular doctor for a normal head cold and he saw my tongue after his nurse stabbed it with the thermometer (i almost cried it hurt so bad). He told me to tell my orthodontist that I needed ad oral surgeon. I first met with my oral surgeon in march of this year. He put me on three weeks of antibiotic and told me it was just an infection and would go away soon. Well, three weeks later it was still there so he took a biopsy to rule out cancer. The day before mothers day I called the oral surgeon because the "infection" had begun growing on top of my tongue and it was large and very painful. He called my house a few hours later to tell us he found something and needed me to come in that mon, the day before my 20th birthday. He told me that it was SCC and immediately referred me to the head surgeon in head and neck cancers at Sloan-Kettering. My appointment was for that weds. I met with him and he told me how serious this condition was and that the tumor was rather large for my age and the amount of time I had it. My surgery was scheduled for two weeks later. Inthose two weeks I did all my pretesting and admissions testing and tried to finish up the spring semester. I ended up having to take an absent for final grade and an incomplete. I finished my other classes though. I had 60% of my lateral tongue removed and had a bilateral neck dissection during which the doctor removed 28 lymph nodes on May 24. 25 from the left and 3 from the right. 3 on the left had cancer in them. One of the lymph nodes had a 1 inch mass that had burst the lymph node. The tumor in my tongue turned out to be about 3 inches by 1 inch. They made the flap using tissue from my wrist and replaced that tissue with a graft from my leg. I now have a feckle on my tongue, lol I was unablt to eat and had a feeding tube down my nose also. The doctors told me that would take a while to be understandable when I speak but my speech went almost back to where it had been before the surgery right away and has been improving since. They also told me I would probably not be able to play my flute again, but I'm already playing like I did before the cancer. I showed them, lol. Also I was back on solid foods, cause i cheated on my diet a little, within two weeks out of the hospital. On this coming monday I will be starting my radiation and chemo. I will be getting 7 weeks of hyperfractionated IMRT radiaiton (lower dose twice a day, meaning more dose per day) and 3 chemo treatments every 21 days (they will be using cysplatinum). I will also be receiving amifostine shots everyday. I had a feeding tube put in surgically yesterday June 14, feeling fine now just like I did too many crunches. After my radiaions and chemo traetments are done I will be doing 30 dives in an oxygen chamber for an hour a day. This is supposed to reverse the effects of radiaition on the jaw and teeth. I completely understand ad will soon understand your ordeal during your treatments as well. I would like to talk to you more. Maybeyou could instant messege me. I can always use new friends, especially those who were in my situaution and understand what I'm going through. My im is prncsaurora0820. I'm usually online in the evening between 5 and 10 but not everyday, it really depends on how I'm feeling and if I went out with friends. Thank you for posting your story for me to read, I was a little scared and still am but not as much about my treatments. Sorry my post is so long, I needed to talk.
~Steph~

maur
Posts: 23
Joined: Jul 2004

Steph, You sound soooo strong! You are amazing. My friend was diagnosed with stage 4 SCC. The tumor is on his tonsil and lymph node involment. He just finished chemo and radiation in July and has lost alot of weight. He had a peg tube placed also and because of radiation side effects he can't swallow solid food yet.He is a mess. He is very depressed and I am having a hard time keeping his spirits up! I'd love to talk, email me at maurs418@yahoo.com. Thanks so much and God bless!

jschirmer
Posts: 2
Joined: Feb 2002

Hi there I am a seven year survior of tongue cancer. I had three fourths of my tongue removed. I eat by a feeding tube but lead a normal life. I had surgry, radiation, and chemo. i have email at joeschirmer@woh.rr.com I would love to hear how you are doing with treatment. I would im you but dont know where to im you at. Take care and stay positive you will be ok. I am 58 and hate to see anyone as young as you going thru this type of cancer.

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