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.

About 2 weeks post Tx I started to go online to find a support group and I found an important sounding BIG NAMED support group that was, like you said, small potatoes. I mean I would post and 2 or 3 days later, if I was lucky, I would get a response. Shortly afterwards, I get an e mail from someone big and famous on this site telling me to jump ship which I did and I am so thankful that I didn't continue to waste my time at the other site.

Michelle,

It's kind of funny. Last night I thought that I would not be coming back (at least for awhile). But sure enough, the second I turned on my computer, this is the first place I went. Although I haven't been very involved here, I can't help checking up on everyone. I have been reading all the posts for about two months and feel concerned about everyone. I can't even tell you how worried I was when Ezjim had his surgery last month. The days felt like weeks waiting for an update. Meanwhile, I have never even posted to him or received one from him but I was so concerned. Again, I felt the same way with your husband Dan. I told you this before, but I felt somewhat connected to you because of your age and having small children. You are dealing with so much with such grace and strength. It is very inspiring. You have inadvertently given me strength. I realize now that I need to face whatever comes my way head on. There is no turning back now. I am just going to take one day at a time.

I have learned so much from this forum. Not only about cancer, but about how to deal with it from the caregivers perspective. It really is a wonderful place.

Denise

Denise - your words are so very kind - thank you!!

It's a very "addictive" place. I feel like I go through each day and I am blessed to encounter many people who care about my family and who are praying for us, etc. but none of them "really" get it. I don't think they can imagine how hard it (cancer) is to begin with. Then those that have cancer experience don't realize how much harder head & neck cancer's are. When I come here I feel lifted up, validated, understood, helped, etc.

I hope you stay with us and post when you feel like it. When we don't hear from you we'll know your watching and cheering us on!!

I'm sure you've found lots of data about your mom's type of cancer, but if you need any help finding anything let me know. I honestly think by now I have read everything ever printed about salivary gland malignancies. If I had access to things like linking hub and others that you must have to be a doc to get to - I would be fully "schooled" on the subject.

Good Morning All!
I can appreciate your concerns having gone through the same with my mom, and still continue to do so at times. My mom recently broke down into tears and said she never realized how "vain" she was. It broke my heart because she is not a vain person at all. Her cousin happened to call the next day and I told her about my conversation with mom about how she looks and she said, "THAT'S TERRIFIC!!" I thought, wow...she's going insane...but then she said to me that the reason she felt this way was because mom still cared, that she still has the fight in her! She had such a positive outlook on everything I told her. Her spin on this was a gift to me that I was able to relate it back to my mom and it gave her a boost that she really needed. One bit of advice that I would like to share is that you have had or are having a ND, get lymphedema therapy set up so that you can start immediately, as soon as the doctor says it's ok to do so. I wish that we would have begun sooner, but it is what it is, and mom is, as always, being so good about doing what she needs to do. Don't misunderstand me, if you read back on some of my older posts you'll see what a mule she was about some things....but that mule in her has helped her endure everything.
Hope today is a better day for everyone!
Donna

Hi Donna- I wish sometimes that I was stubborn. My husband is and I don't think he would have gotten through what he has if he was as wishy washy as I am. There is almost a beauty to people who go through this horrible experience. I hope you are taking care of yourself also.
Sue

Sue,

I'm not sure I would agree with beauty thing but I definitely agree with the horrible experience thing.

I have trouble with my scars. My jaw does not move with my face since part of it is missing. I still try to talk with the best of um. I worry sometimes about my job because of the way that I look. But,this is how I look so I just go on. I am mad some days because they did not find any cancer in my jawbone but took it anyway. Then, the next day I am so grateful that they did and that I am even alive. It is like Jeckle and Hyde in my head. You cannot cover the scars on your face like scars on other parts of your body. It is hard to look in the mirror sometimes, but it is good to be alive.
Debbie

By beauty I meant the grace with which some people continue on. I see the suffering and there is beauty in the strengh that my husband shows.
Sue

Debbie,
Thank you so much for your honesty regarding your scars. Tomorrow is my moms appt w/ the dr and surgery is scheduled for Wed. I have a feeling that the dr will tell us tomorrow that he wants to remove her jaw or some of it. I'm not sure yet but that seems like the next logical place to go. My mom, as well as myself, are skeptical to proceed with the surgery because the margins from her initial surgery were clear although not clear enough for the dr I guess. Because now he wants to take more. In your opinion, if your dr didn't perform surgery on your jaw do you think it would have spread there anyway? I know each case is extremely different, but I am just curious. Thank you so much for posting and I am sorry that you have had to deal with this all this.

Denise,
I honestly don't know if it would have spread. I suspect it would have. But, I had to do whatever I could to give myself the best chance of coming out of this. mY ent said that they used to just scrape the bone down somewhat but they had better luck with removal. I am still not out of the woods yet. I just am Ok for now, which is all we have. I hate that your MOm has to make this decision. I wish I had gotten some more opinions. I think she should at least weigh all of her options. I have a friend who had the same surgerry as mine and she has had no problems at all.
So, it is very individual I think. Some days I can't stand this and somedays I am scared I will get it again.
Take care- I wish I could help more.
Debbie

Debbie, you have helped me and I thank you. I pray that you will be ok. This disease seems so ruthless and so unfair. But from the short time that I have been a part of this mess, it has been people like you that have given me the tools to understand where my mom stands and what may lie ahead. I truly believe that knowledge is power and you are one of the many who have given me this. I hope you realize how important your experiences are with the rest of us getting ready to face many of the same challenges that you have faced. I still don't know for sure what is in the cards for my mom, but I will learn as much as I can from wonderful people like yourself.

Denise,
Please consider getting a second opionion from a good facility.
All is not lost. I read somewhere recently this phrase"Don't worry about tomorrow, you did that yesterday" HOW TRUE- now
if I could just take that advice.
Thank you for your prayers, Denise. You are so kind. Your MOm
is truly blessed to have you with her now.
Take care,
Debbie