I (my name is Sandra) registered in this forum on behalf of my mother Helen who is going to have her 84th birthday on June 28. She has been diagnosed with stage 2 oral tongue cancer. Today she had a CatScan and a chest xray. Her surgery is scheduled for July 2nd.

As all of you know, this is very scary stuff. Besides the cancer itself, she is especially concerned about whether the surgery is disfiguring (i.e., will she look so bad she won't want to go to church or the grocery store) and whether she will be able to eat, drink and speak relatively normally. It would help if she could hear some encouraging words from some of you. Thanks.

Sandra, I had part of my tongue removed in 1987 (at the age of 32)and a neck dissection on the right and then in 2001 had more of my tongue removed and a neck dissection on the left. I didn't require any bones in my jaw or face removed as some others have. I was very paranoid about my looks after the first surgery. I was in grad school and went back to class less than a week after surgery. It was obvious that I'd had major surgery and people did stare at me, however after I started to heal no one seemed to notice much or even if they did they kept their stares and opinions to themselves. For a while I wore scarves and turtle necks and then decided it was more trouble than it was worth so I stopped. Now I have scars going from each ear, down my neck, they meet above my throat and continue up to my chin. To be honest, I've gotten used to it and I don't feel at all uncomfortable meeting people for the first time anymore. She will probably be more bothered about her change in appearance than will others initially. I now wear scoop neck blouses and started wearing necklaces again (I didn't for a while because I thought it drew attention to my neck). I also have some skin discoloration from the radiation.
I am more paranoid about my voice, which is still understandable but slurred and raspy. I feel that I have to explain when I first meet people that I have some difficulty speaking. What speaking, eating, drinking will be like for your mother is hard to say. It will depend on the surgery and how she reacts if she has radiation. I can now eat soft bland foods and drinking is ok. I wasn't able to eat for several months and had to have a feeding tube as did many others who have had oral cancer treatment.
What I can say without reservation is that there are people who can help her in these areas. Speech therapists can help with the swallowing and speech and it is better to start earlier rather than later. Make sure that the person you are dealing with has experience in dealing with oral cancer patients and really understands the issues. Physical therapy can also help if she has neck surgery.
As you know, your mother has a tough road ahead but the support of people who care about her will be of tremendous value to her. Please feel free to contact me if you want to talk further. Also please keep posting on OCF. This is an incredible support group and everyone will want to know how your mother is doing. Tell her that there are many people out in cyberspace who are pulling for her!

Ilene,

Thanks so much for your reply. I will print it out and give it to my mother. She has trouble reading off the computer.

Today she and I sat at the computer and I read her some of the posts from tongue cancer survivors. She was much relieved in that she was thinking the very worst. I know that "the worst" is going to pop up in her mind from time to time, but just knowing that people like you have survived and are out in the world is important. She had never before this diagnosis heard of anyone having tongue cancer and neither had I, so this site is a God send.

Thanks for your support.

Helen,

Without going into a long story, Ilene pretty much explained how I felt. I had stage 2 cancer of the tongue and stage 2 on the base of my mouth. Your Mom may have some problems with talking at first, but beleive me the more she talks the better it will get. I still have some problems when I'm really tired or try to talk to fast, but I've gotten used to it. I can eat pretty much anything, but I'm still careful in public. Since this bone graft, I've gone back to if it can be eaten with a knife and fork, I'm fine. You and your Mom are in my thoughts. If you want to email direct with any questions, please feel free.

Anne.

Helen,
That is my mother's name also. My mother has been battling OC since April of last year. Her saga started in April of 2001 with the diagnosis and then neck surgery and feeding tube insertion. These were done on the same day and she was out of the hospital the next day. She was 78 at the time. Radiation and chemo followed. It was very tough on my mother, but she started to mend after the end of radiation last August. Her followups went well until right before Christmas when her ENT saw a spot that wasn't going away. She was sent for all the previous tests again and it was cancer. It had spread to her mandible and floor of her mouth. The doctor referred her to another ENT at a teaching hospital in the area that was equipped to deal with such major surgery. After more tests including a PET scan she was cleared for surgery and it took place on Feb. 11, 2002. Things went pretty well. She had a trache, but never required a ventilator. The surgery took 6 hours, but she was out of the ICU the second day. Things went well, but after about a week she developed a canal in her mouth and it had to be packed and antibiotics administered. That cleared up and after 4 weeks she was released. She spent her 79th birthday in the hospital. She went to stay with my sister for 6 or 7 weeks and now she is home by herself and has even started driving again. Yesterday she had a followup with her ENT and he said he couldn't be more pleased with her progress. Her surgery consisted of the removal of over half her tongue, her mandible and part of the bottom of her mouth. I am amazed at the stamina of this 79 year old woman. She is one tough old bird. My mother is concerned with her appearance, but considering the extent of the surgery and the insertion of a plate to replace her jawbone she looks great. I would have expected some major disfigurement, but it's not like that at all. The last time my mother went to the doctor she told him that she felt anxious a lot of the time. If it was me going through what she did they would have had to peal me off the ceiling. She is in good spirits and has retained her sense of humor, which is often directed at her own predicament. When it was decided she would have the surgery to remove a portion of her tongue she said that there were probably many people who would like to be wielding the scalpel. I imagine your mother must be scared, but I can only tell you that my mother has been amazingly resilient through her ordeal. Best of luck and if a name means anything Helen will do as well as my mother Helen has. Best of luck!!!

Thanks for all the good info.

My mother's surgery is Tuesday the 2nd (say a prayer for her) and she is having one third or more of her tongue removed and all the lymph nodes on her left side (one of them shows some cancer). We do not know what the implications are of cancer in a lymph node.

She has had a stress test yesterday, which showed she is up to the surgery.

She wants to know when she will be able to eat ice cream again! She has a good attitude and a lot of faith in her surgeon, who does seem to have an excellent reputation.

We are hoping for the best. Tomorrow is her 84th birthday. She is hoping to make it to 85.

Sandra

Sandra,

Best of wishes for your Mother. Tell her yes, she will be able to eat ice cream again. In the beginning it might just be in the form of a milkshake, but that is better than nothing. Some other staples that I found handy in the beginning were puddings, jello, cream of wheat, oatmeal and grits. Also mashed potatoes with lots of gravy. I would take ground turkey or beef and put it through the food processer and make up patties with gravy. She will learn by experimenting.

I'll be thinking of you and your Mom on Monday.

Take care.

Anne.

Sandra, in answer to your query about a positive lymph node, that pretty much means radiation after your mother heals from the surgery. If this is the case, agitate until she gets the new IMRT radiation which is a kinder, gentler way to go. You can read about this on the main site here. Wishing both of you all good luck!
Joanna

Sandra,

I have just joined the forum because my mother also is being treated for oral cancer and is scheduled for surgery July 10th. At this point the surgeon is planning to remove the lumph nodes on the right side of her neck, part of her mandible, cheek and tissue from the floor of her mouth. Probably they will need to do a bone and skin graft from either her hip or her lower leg. She is almost 81 years old and has already had surgery, chemotherapy and radiation, so I am very interested in how your mother is doing. My thoughts and prayers are with her as she recovers from her surgery.
Jane

Before you ask for IMRT for your mom please read Mark Giles comments and description of it in medications treatments and procedures board. Cervical nodes which are positive for cancer preclude the use of IMRT, though it is a very exciting new technology for those with stage one and two oral cancers confined to the oral cavity. Remember in reading these boards that this is a public/open forum, and while many of us here are well informed having been through the process, people