Tongue Cancer In 18 Year Old

Please, can someone give me any information, good or bad, regarding the possible outcomes for my niece?  She's been diagnosed with tongue cancer, which was missed completely by her family doctor and two dentists.  She's had symptoms for over 8 months, but it's so rare in young people--the dentist she saw last told her she just had a canker sore.  They know it's in her tongue and mouth, and has spread to lymph glands on both sides of her face.  She's had teeth removed to begin the radiation therapy, and they're planning chemo but not sure of the regimen yet.  My sister is completely overwhelmed, and not communicating with us very effectively--this is a beautiful young lady, inside and out, and her firstborn.  They are very close, and so are my husband and I.  I adore this child, and am always very up and positive when I see her, but would like to know the truth about her chances.  I know it's not good that it's spread to her lymph glands.  She's never smoked, doesn't drink, and is otherwise very healthy.  Is her age a plus?  Has anyone out there had any experience with such a young tongue cancer patient?  She's such a tiny thing--chemo and radiation are going to be very hard on her.  Any information would be much appreciated.         Much thanks,      Betsy

Hi Betsylyn,

I found your post when I was doing research on oral cancer. My boyfriend of eight years was diagnosed last year and he is only 25. He had oral cancer start on his tongue which wasn't found by either the doctor or dentists and it spread down to his lymph nodes. Because so much time went by before it was discovered, he was in a late stage before he got his surgery done. As of now, he has 90% of his tongue removed, chances of him eating through his mouth again aren't good. He had one lymph node removed and part of the other one, plus two more tumors under his chin. After surgery he had radiation and chemo for 8 weeks, in which they had to remove his wisdome teeth before they started, and now after everything the tumors came back. Doctors told us prior to surgery that he has age on his side because he is so young, but because his tumors had spread so rapidly before, he still has four more around his chin and neck area and they don't think there is a good chance for him. 

But that is the story of my boyfriend, everyone is different and through prayer and positivity you can all get through this. Don't give up and if you have any questions, please feel free to email me. Thanks.

 

On 2/14/2007 Ov_bm wrote:

Hi Betsylyn,

I found your post when I was doing research on oral cancer. My boyfriend of eight years was diagnosed last year and he is only 25. He had oral cancer start on his tongue which wasn't found by either the doctor or dentists and it spread down to his lymph nodes. Because so much time went by before it was discovered, he was in a late stage before he got his surgery done. As of now, he has 90% of his tongue removed, chances of him eating through his mouth again aren't good. He had one lymph node removed and part of the other one, plus two more tumors under his chin. After surgery he had radiation and chemo for 8 weeks, in which they had to remove his wisdome teeth before they started, and now after everything the tumors came back. Doctors told us prior to surgery that he has age on his side because he is so young, but because his tumors had spread so rapidly before, he still has four more around his chin and neck area and they don't think there is a good chance for him. 

But that is the story of my boyfriend, everyone is different and through prayer and positivity you can all get through this. Don't give up and if you have any questions, please feel free to email me. Thanks.

Thanks so much for writing.  Some one else sent me to the Oral Cancer Information site, and it;s been daunting.  I'm so sorry about your boyfriend.  I'm 52 and have been relatively healthy all my life, and I can't imagine what it must be like to deal with something like this so young.  My niece's cancer was also advanced when diagnosed--I talked to her 4 nights ago and she's been told it's all through her tongue, one side of her face, and in the glands on that side of her face.  She starts chemo and radiation this coming Monday and I am at a loss as to why they arn't doing surgery.  I don't know if it's because of her age, or perhaps the size of her tumors, but everything I've read recommends surgery once it's reached the lymph nodes.  She's been told that the chemo may eliminate, shrink, or do nothing to her cancer, but they want to try to shrink the tumors before they operate, to take out less of her face and tongue.  She's a beautiful young girl but I can't believe they would take a chance with her life to save her looks.  She and my sister are very close, and my sister is just a mess, so I don't want to press her for any more details than she feels comfortable giving.  I guess there's just no way to know yet.  I very much appreciate your message, and I hope that my niece's boyfriend remains as loving and loyal as you obviously have been to your boyfriend.  All the best to you and him.  Thanks.

I understand completely how you feel. From the time I was told my boyfriend had cancer I went through stages, first sadness, then shock, now I'm at the anger stage becuase they have stopped treatment becuase they don't think it will help him anymore. But the person dealing with the cancer itself will also go through certain stages, so being strong and prepared to be there is what your niece needs the most. Some days are going to be tougher than others, but if she can see that she is surrounded by people who care then it will be easier then coping through it alone.

I'm surprised that they aren't doing surgery for her, but keep in mind that the surgery for this type of cancer and for how big the tumors are is huge, and can be life altering and can also be leaving the patient disfigured. So by doing the chemo and radiation, they want to shrink it to see if by then if they have to do surgery, it won't be so extensive.  For my boyfriend he had majority of his tongue removed, which means no eating, swallowing and trouble speaking - so maybe this can be a better way for your niece.

Good luck to you and your niece, she is already in my prayers and my heart goes out to her. I go to this site: www.oralcancerfoundation.org, that is where I did all my research, asked questions and got the best support - knowing the facts first hand from people who are dealing with the same issues as your niece, will prepare you all to be there for her. Good luck and keep me posted - if you ever feel down and need someone to talk to, please don't hesitate.

I understand completely how you feel. From the time I was told my boyfriend had cancer I went through stages, first sadness, then shock, now I'm at the anger stage becuase they have stopped treatment becuase they don't think it will help him anymore. But the person dealing with the cancer itself will also go through certain stages, so being strong and prepared to be there is what your niece needs the most. Some days are going to be tougher than others, but if she can see that she is surrounded by people who care then it will be easier then coping through it alone.

I'm surprised that they aren't doing surgery for her, but keep in mind that the surgery for this type of cancer and for how big the tumors are is huge, and can be life altering and can also be leaving the patient disfigured. So by doing the chemo and radiation, they want to shrink it to see if by then if they have to do surgery, it won't be so extensive.  For my boyfriend he had majority of his tongue removed, which means no eating, swallowing and trouble speaking - so maybe this can be a better way for your niece.

Good luck to you and your niece, she is already in my prayers and my heart goes out to her. I go to this site: www.oralcancerfoundation.org, that is where I did all my research, asked questions and got the best support - knowing the facts first hand from people who are dealing with the same issues as your niece, will prepare you all to be there for her. Good luck and keep me posted - if you ever feel down and need someone to talk to, please don't hesitate.

I understand completely how you feel. From the time I was told my boyfriend had cancer I went through stages, first sadness, then shock, now I'm at the anger stage becuase they have stopped treatment becuase they don't think it will help him anymore. But the person dealing with the cancer itself will also go through certain stages, so being strong and prepared to be there is what your niece needs the most. Some days are going to be tougher than others, but if she can see that she is surrounded by people who care then it will be easier then coping through it alone.

I'm surprised that they aren't doing surgery for her, but keep in mind that the surgery for this type of cancer and for how big the tumors are is huge, and can be life altering and can also be leaving the patient disfigured. So by doing the chemo and radiation, they want to shrink it to see if by then if they have to do surgery, it won't be so extensive.  For my boyfriend he had majority of his tongue removed, which means no eating, swallowing and trouble speaking - so maybe this can be a better way for your niece.

Good luck to you and your niece, she is already in my prayers and my heart goes out to her. I go to this site: www.oralcancerfoundation.org, that is where I did all my research, asked questions and got the best support - knowing the facts first hand from people who are dealing with the same issues as your niece, will prepare you all to be there for her. Good luck and keep me posted - if you ever feel down and need someone to talk to, please don't hesitate.

hi Betsy I wanted to let you know, when I was 29 I was diagnosed with the same thing as your niece, I also have never smoked and when I went to the doctor and the dentist they thought it was a canker sore. I had 60 percent of my tongue removed and half my jaw replaced, the operation was 22 hours long, they rebuilt my whole face. I was back home in ten days and was able to work until I had my radiation. I going to tell you the radiation was very hard and takes alot out of you, it took me 2 mounths to recover, the radiation will also kill your saliva. I am now 38 and I still heathy and living a normal life, except I cant eat soild food. I want to tell you there is still hope for your niece to live a happy life. ps if have any questions you can contact me.