My mom is scheduled for another surgery on the 18th because the dr was not happy with the margins on one side. The path report also indicated that her cancer is high grade. We don't get to meet with the dr until next friday so until then, we are just in limbo.

When my mom had her surgery they removed half of her lip all the way down to her chin. The part by her chin (inside) is where the problem is. But during the initial surgery, they went as far as they could. So where do they go now? Are they going to have to remove her jaw? I am just sick over this. She told me that if she doesn't like what the doctor says, she is not going to do anything. She said that she is not going to let them take her apart piece by piece. Can anyone relate to this? I know she is scared. I am too. I thought we were getting off easy at first but it doesn't appear that is going to happen. Also isn't it customary to have a neck disection with a high grade cancer? And if so, what exactly occurs with that? I know it is to remove lymph nodes but is that another disfiguring part of this process. I know it sound like the disfigurement is my main concern, but it is not. It is my moms. Maybe she is focusing on it, because she doesn't want to deal with the reality that this is life threatening but whatever the case may be, her worries are my worries and I am going to help her deal with whatever issues she needs to deal with.

I am hoping that someone can help me to help her get through this. How do I get her to look past the superficial stuff and see that all that is really important is that she fight this? For those of you who have dealt with this, I could really use your advice.

Denise,

My mom has the same scar and the doctor told her she may loose movement and not be able to smile. She looks different and people look at her differently now but it sure beats the alternative. She was a little worried about what people think but she got over it. She has her life and she's going to see my little brother graduate from High School this year and my daughter her granddaughter start kindergarten this year. These are things she prayed she would be able to do and although she is slightly disfigured she is still my wonderful beautiful mom. Hang in there. It's a rough road my mom felt the same way about how she looks. She turned 60 this year she has really looked past the superficial surface stuff and lives her life to the fullest.

Take care,
Dani

Denise - I don't know that I am much help, but I am going to try. Dan's surgery was in a different area - major gland - parotid. His margins were not clear and from what we understand the rest of it cannot be taken with surgery because it runs into the skull??? Honestly still don't clearly understand that. I know this was one of the big indicators for aggressieve treatement (rad and chemo). In Dan's case the CT Scan showed swelling in a lymph node so they did a neck dissection on that side and removed 30 nodes - 4 cancerous. It seems though that a ND is not a "given" - it very much depends on the doc and all the circumstances. I am sorry you have to wait so long to meet with the doctor. We had to wait a couple of days between things and even that was horrible. I will tell you though that Dan was very very very worried about the "looks" aspect of all this. I finally just had to get a little tough and tell him that right now we can't be worried about looks - lets worry about living and then if we need it will worry about plastic surgery when we've beaten the cancer. I think we have been very blessed though. Our ENT surgeon had plastic surgery training as well and he did reconstruction during the main surgery and Dan looks great!!!! If you aren't looking for it you can't tell he had surgery and the surgery was recent - 2/5.

Your mom is lucky to have you and you sound as if you love her very mcuh. Just keep holding her hand adn we'll all keep praying!

Michelle, many people here are Squamous Cell Carcinoma patients. Your questions may not get as many answers as others because your mother has a different kind of cancer. You ask about radical neck dissection and many of us have had that. However, I do not know if the RND is the correct treatment for your mother. As far as it goes, RND is not all that disfiguring. Many people I meet do not notice my scars unless I mention them. (perhaps they are being polite)

Denise,

You mom just needs time to adjust to all this. She will sort things out in due time. This is all a huge shock to her and she's coping the best way she can. She can always talk to a professional about her feelings but other than suggesting it, it should be her initiation.

Denise,
Tell your mother that I also had a ND, I have been taking oil portrait classes for a while and "sat" for the class for a few weeks last summer. Some of the students who knew me before and after surgedry did not realize that I was "deformed." We tend to see our own selves much more critically than others do.

Besides, there may not be a need for a ND for her. Being sick and facing more surgery is just part of her fear. There is the real issue of mortality . She needs your support, not necessarily as a cheerleader but just to acknowledge her fear.

There are many here who have faced the same issues and they will be posting. You will see that fear is terrible and hope is a powerful antidote. The hardest part right now is that until the doctor gives a plan of action the brain works overtime on the what-ifs. This happens to firstimers and to those of us who have faced these issues more than once. Be strong and best wishes for a good outcome.

Denise- As I have posted here before, my husband had a RND and part of his right lower mandible removed. It was replaced with a bone from his left leg. Many people have told him that they were expecting the worst when they saw him and they were amazed at how good he looks. He too was worried about being taken apart piece by piece but that's a personal decision to make. Maybe your Mom would like to "lurk" around this site-I finally got my husband to come on and I found him still at the computer an hour later reading people's posts.
Sue

Hello,
My dad had a mandibulectomy with neck dissection as well as jaw replacement done on Jan 23, 2008. Unfortunately, he had circulation problems in his tib/fib so they were unable to use his leg bone to replace bone in his mouth. The took, muscle and tissue from his stomach. Initially, his face was HUGE but throughout the weeks and now (2 1/2 months later) there is no significant difference. His plastic surgeon did a remarkable job. He was split down the chin and you can barely tell. Perhpas, mom and you need to talk with the plastic team to address your concerns.

Blessings.

Thank you all for your responses. I haven't been on this site for last few days becasue I was trying to research my moms cancer on other sites. It is just so rare that it is hard to find anyone else that has it. I have been trying to piece together all the information I have been given here as well as the information from the few abstracts I have found. It is very frustrating and confusing. I am a very black and white person. There is just way to much gray area for me to handle.

Denise - I am glad to see you back. Reading your post is so eerily familiar to what I felt with Dan's dx. It is very very hard to handle when you cannot find anyone with the same type. To this day I have now met some people with salivary gland cacner, but not the same type as Dan's. I say that I am past that anxiousness, but I still spend time each week searching... So I can't tell you that your frustration will go away, but perhaps it will get easier.

What I realized is that even though the OCF folks here on this site don't have the exact cancer type - everything else is VERY similiar. Treatments, side effects, fears, frustrations, etc. So in that regard this is the best place for me. I have done intro's and joined other sites and they are like comparing a small town in Mississipi with New York. Almost pathetic and I hope those people find there way over here. This is the most supportive, caring, compassionate and fun group of people I have ever had the pleasure of "meeting".

Please feel free to PM or e-mail me and I will help anyway that I can or if you would rather talk we can exchange phone numbers.

Keep posting and join in the group here. It was a little tough at first - kind of like the first day at a new school or a new job, but then I just jumped in and now I don't know what I would do without this place.