My mom had cancer on the soft pallet, January 26, 2009 they removed her pallet and fitted her with a prosthesis. It has been a long journey my mom has never smoked or drank. January 15th we were old the cancer has returned, tothe same area, except the opposite side of her mouth, the left side. We met with the Tumor Board Monday 2/15 and they tol us with surgery and radiation my moms chance of it returning to the same area would be 20% 80% if she did not have radiation. Radiation will be 6 weeks 5 days a week no weekends with a feeding tube during this time. We see the surgeon on 2/18 again, this is also my moms 70th birthday, in order to have something to attach the prosthesis to they may have to have a plastic surgeon take a bone from another part of her body and reconstruct the area of her mouth to attach this to,since they have already removed he entire pallet, wih out this she will never be able to eat or drink again, and everything will come out her nose since it is an open hole in there. We are all so scared so worried, just the not knowing, the would if's, the wondering why they said she did not need radiaton after the first surgery.

Hi Kelly48

I am so sorry to read about your mom's situation. I hope that you'll find what you need on this site.

Please let us know how the appointments go.

You're not alone in this.

Julia

Hello Kelly,
I'm so sorry to hear about your mum.It's such a worrying time isn't it....all the uncertainty of it all.It sounds like your mum has got excellent doctors that will do everything they can and the support of everybody on here will help you answer any questions or worries that you have and know exactly what you and your mum are going through.
I've just recently joined myself and although I havent' been diagnosed yet I have to have a tongue biopsy shortly.I thought things like this only happened to other people not me.
Just to let you know I am thinking of you both.
Best Wishes,
David.

Hello Kelly
I have just come across your post and hope you are still checking in.
How distressing for you and your poor Mum to have to go through this ordeal at her age. I can't imagine how you must be feeling.
Please keep us posted as to progress etc and also be sure to use the board for the support you must need yourself. Are you your Mum's carer? Do you have support for yourself?
We are all here for you ~ your post has been moved down from the top and if readers don't click onto the topic area and only look at the most recent post, it sometimes means newbies get lost in the system.
I personally look forward to hearing from you and helping wherever I can. This is a very tough time. Take care of yourself.
Best wishes from Down Under
Deborah

Hello, my moms appointment with her surgeon last week on the 18th was what we already knew. In order for my mom to have any chance of survival the cancer must be removed other wise we are looking at maybe 7 months with my mom 12 months at the most. The only option of her ever having a pallet in her mouth and not being on a feeding tube for the rest of her life is possible reconstruction surgery. They will take a bone from another part of her body and try to build a pallet in her mouth. My mom is looking at two different surgeries about two weeks apart. My mom met with the plastic surgeon today who perform this surgery, while looking at her mouth he told her it looks like the cancer has spread to her cheek, this is all news to us that we were not told. Do you ever feel like it is just never going to end never going to stop spreading. I am thankful that I have three brothers and a sister and we all cling to each other for support. We are all just so overwhelmed at this point and it is so hard to absorb all the information, not only to absorb but to want to make sure we are all making the right choice along with our mother. You can't help but wonder and we all know that half of the battle is to be positive and to keep our mom positive and we are trying so hard. I have to admit the last few days have been filled with many tears and when you think there is no more tears to cry they come flowing liek an ocean all over again. My moms surgeon has had a cancillation in the surgery center for tomorrow 2/23 we are in the middle of deciding right now if we are going to have the first surgery for the removal of the cancer tomorrow

From the moment you first hear the word cancer the world just seems to spin out of control,after all cancer is something other people get isn't it? Oral cancer and its treatment is the pits.Just when you think you've beaten it back it comes for another try and here we go again.

I hope you decide to go ahead tomorrow.Time is everything and the sooner its done the better,then she can get on with building up her strength ready for whatever comes next.The good thing is she still has options and that is a real positive.It won't be easy but with the support of a loving family she will fight her hardest i am sure.

Hello Kelly
What can I say? This is so tough for you all but surely the opportunity to get into surgery right away is sign of a bit of luck.
Cancer is like a sneaky rat, getting into things while everyone is busy getting on with life so the sooner you can trap it and get rid of it, the better.
I know what you are saying about the tears. Take heart and strength from each other so you and your siblings can help get your Mum through this terrible time.
Thinking of you and sending positive vibes from Down Under
Deborah

First of all I want to Thank each and every one of you for your support and positive words of encouragement.
Second of all my mom has decided to have her first surgery next week on 3/2/2010 The second surgery will be scheduled appox. 2 weeks after the first.
Not sure if anyone can point our family in some direction. We are looking for a hotel that can accomidate all of us so that we cann al stay near the hospital during our moms recovery. The first surgery she will be there for about 4 days. I have been on line looking and the rates if hotels are very exspensive. My parents live 2 hours from where the surgery will be performed and us kids live 7 hours. We need and want to stay close to our mom while she is in the hospital not to mention our dad can not drive back and forth everyday, his health is not much better than our moms. If anyone know or has any information or ideas of how we may locate any hotels at reasonable rates or that offer dicounts for people like us please let me know. My moms surgery will be performed in Irvine California.
Thank you,
Kelly

Hi kelly
my heart goes out to you and your familly. dont know what to say except i will be thinking of you all.

This is a difficult one for us "Brits " to answer,i can only tell you what we would do here Kelly.If the hospital has a social worker (i think perhaps you use the word "welfare")then contact them.In the UK we have macmillan cancer support who deal with things like this,they tell us what financial help you can get with travel and accomodation and some hospitals have the facility for next of kin to stay in the hospital .Perhaps a post on the Oral Cancer Foundation support group site might get you more information regarding the USA or even a PM to Mimi who is our resident American here.

Hello Kelly
I had a tumor between the hard and soft pallet I had surgery last April and rt in july so just getting back on track I think your mother had a more difficult time than i had whats ahead sounds scary I hope it all works out I will be thinking of her and watching out for your posts best of luck
Noreen

Hi Kelly,

So sorry to hear about your Mom. I often think this is harder on the caretakers than on the patients.

One of the patient advocates on the Oral Cancer Foundation board that Cookey mentioned is Brian Hill, also from SoCal (Laguna Niguel). Am sure he'd be able to help you or point you in the right direction.

OCF

Is the hospital Kaiser or UC Irvine? I believe that each of them will have a Social Services Dept. that can be of help. The two hospitals I've been in locally (Sacramento) have facilities for out-of-towners for both the patient and a carer, all on a first-come, first-served basis. A woman I had rads with was staying in a place that also made room for her 2 minor children Monday through Friday. I don't know if they would have accommodated a family as large as yours, particularly with adult children.

Your local ACS (American Cancer Society) can also be of help.

I just looked at the hotel rates in Irvine and they seem to be in line with the area; however, there's a Motel 6, a La Quinta, and a few others that are quite a bit cheaper but I have no idea where in Irvine they're located. Use this lookup for a few more:

Cheap rooms

Best of luck in this trying time. Despite her illness your Mom is lucky to have such a loving support group.

Mimi

hi kelly
what a rotten time for your mum and you and the rest of the family,as liz has said when you hear the word cancer everything certainly spirals out of control and it is devastating for everyone.just wanted to say good luck with your mum's op we are all rooting for her.love shirl xxx

Kelly,

I had a doc appt today at my Cancer Center (just a checkup - I'm still cancer free!) and asked the desk receptionist about hotel discounts for friends and family of hospitalized patients. She said that at the hospital we were in, that there is a concierge who makes such arrangements and that the hotel rooms are very deeply discounted.

If your hospital doesn't have a concierge, check with Social Services or the front desk receptionist - whomever it is that knows stuff (for lack of a better term!)

Please continue to check in and let us know how you're doing.

Mimi