Found out today that the biopsy came back positive for squamous cell c. It is a tumor on top of my jaw. This is my 6th experience with oral cancer....I think I am still numb from the news but sort of expected it. Doc talked about removing part of my jaw and using bone from my leg to replace jaw, etc...cat scans and mri's to be done Friday after next, then decision on surgery date, etc....I asked my doctor why I keep getting oral cancer, he said he has about 2000 patients and of those about 20 female including me have had new primaries after initial, most are older than me (53). He said they don't smoke or drink....If anyone on here has had jaw surgery or part of your jaw removed, please write to me......Thanks!

Carol,


Well my dear I'm very sorry to hear about the news. I think ChristineB is probably the best person to talk to, although there are several of us that have had the mandiblectomy w/fibular free flap. She's had multiple recurrences and the mandiblectomy to boot...and she's still living life, kicking butt and taking names to boot!

What I will say is the surgery is rough so make sure you get the finest care available to you. What I will say is that it is very possible to have the surgery and live a completely normal and great life afterwards, even if you have complications.

I love my life and am thankful that I had a great team that put me back together again.

Keep your chin up my dear

Eric

This totally sucks Carol. If I have to find a bright spot it is that you "keep on keeping on". You get diagnosed, deal with it, and then you move on and continue living your life in an exemplary manner. For some, oral cancer is a chronic disease.

"But why ME" must be going through your head over and over upon finding out you are part of an elite group of 20 - seeing as it is a club you really don't want to be part of. This sucks. No two ways about it - but as Eric said - Christine will be one of the best ones to give you advice on the surgery itself, and more importantly I remember how dismayed, discouraged, and disheartened she was with her last diagnosis and I think THIS is special hand she can lend you right now. She's been there.

Having said that, we are all here for you. You will not walk this path alone. Keep posting and I'm sure others will chime in.

Many hugs

Donna

All I have to say is this sucks. I also ditto what everyone else has sid. Christine would e the best person for you right now. I so however undersstand about being in an elite club. I went to HBO today and asked some questions that my Dr. could not answer, because most of her patients for HBO are in there 60's/ She said that she has only had a few people as young as me in the chamber. Anyway, you are tough, and will beat this thing again. You have beaten 5 tims already and you can beat it again. We are here for you. Vent away.

Carol,

So sorry to hear this news. Life just isn't fair at times. I will keep you in my prayers. You are in the right place for advice and support. Stay strong!

Carol, all I can say is Im floored!!!! We talked about this so many times on FB. I know how scared you were and that you 'knew' it was back. I am so sorry!!!!!

Once you get the initial shock out of your system we can better discuss what will happen. Its not easy but you are a fighter just like me and can do this. You gotta do it, we still have to meet up in the summertime, right???? You are young and will get thru it and move on.

If you look at some of my recent posts, its been to a few people who are going thru the same type of jaw surgery. Seems like there were only a few who had this done when I went thru it. Since that time, there must be at least 10 members who have been thru it.

I know you are a little lady so try your best to bulk up. Did you ever get that protein powder we talked about? If not please get some and start using it. You want to be strong going into this. I know you hate ensure but you really have to get a balanced diet with extra calories right now.

Dont worry sweetie!!!! Im here for you thru thick or thin Love ya!!!!

Carol,

I am so sorry that you have to go through this again! I think Christine covered it all. You are in my thoughts and I wish you a speedy recovery. Hang in there!

Thank you all so much, I think it is still sinking in. I totally appreciate the support as you have given me in the past. @Christine, I found a powder to put in a shake, hoping that helps since I really do not feel like eating. Love to all!

I had cancer surgery last April and doctor couldn't get it all, so I had two surgeries with the robot at Univ. of Md. and it did get it. Why it keeps coming back I do not know. I did have a good 5 year run from the initial tongue surgery and radiation in May 2002, so that was good. Then Soft palate cancer in 11/2007, I don't want to scare anyone on here. sorry if I did. Getting it once is bad enough and I am sorry to all that have had it.

Carol, shit... I'm so sorry to read this. You deserve better, but you sound like a real fighter, strong and determined. My thoughts are with you.

David 2

Carol,
I can't believe this is happening to you again. I don't know what to say except find the best surgeon available and pray they get it all this time. This is going to be a rough one but you can do it. My thoughts are with you.

Take care,
Eileen

so sorry to hear that Carol. In reading i see you don't like boost or ensure, well Ron will go to McDonalds and get a shake and he mixes half the shake with the ensure or boost. better flavor to it oh and it's plain vanilla he uses and also puts in either choco or strawberry syrup if no shake.

Hi Carol,

I am so sorry that you've had a reoccurance. We are all scared of it. Don't worry about scaring people. We are here to support you. If I had a reoccurance I would be here needing support too. I am so hopeful that this time the cancer will be gone forever. My heart goes out to you.

Wishing you good health after this surgery and treatment.

Love, Kate

I was shocked to read that you have another reoccurance Carol as were all your many friends here.
May the treatment and recovery be quick and please let this be the last time.
My thoughts will be with you.
Love
Gabriele

Carol -
You can be strong and scared at the same time because OC is a terrible beast. Know that everyone is thinking of you and praying for a good outcome.

Take care.
Marlene

Carol - never apologize for telling YOUR story. This is the reality of your life and we all know how individual this disease is. While it is scary for new people to see that it does - SOMETIMES - come back, that is the reality of this disease - whether it is oral cancer or other types.

More important is that you "keep on keeping on". You have done so with such grace and lack of complaint that you have been an inspiration to me - and I know you will be that to everyone.

Hugs & Prayers coming your way!

Donna

David, your post made me smile! Thanks to all who posted to me, it helps! xoxoxox

Thank you all soooo much, I really appreciate my Oral Cancer Foundation family. You are all wonderful! Will find out on the 19th what is next, after docs see catscans and mris, etc.....just hoping and praying for the best! xoxoxo

Carol,

I am so sorry to hear this news.

Karen

Carol-So sorry to hear this news. My husband had the jaw surgery and if you have any questions you need answered from a caregivers perspective just let me know.

Well, I honestly cannot believe that I am writing this again but I am. Here goes: saw my doctors today that will be doing my surgery on February 7th. Dr. Ord will remove the cancer which is way in the back left side again, and his associate will be working on my jaw. Replacing it because it is deteriorating,I have ORN. I am scared! Apparently, it is from the radiation. I will have a cat scan and MRI done on Friday.
The Doctors (they are wonderful by the way) talked with me and my husband for an hour, trying to answer any questions we have. They will take bone from my leg to use for my jaw. Surgery will last 10-12 hours, will have a trach again and have a feeding tube put in prior to surgery. Oral cancer has become a chronic problem for me. Praying it all works.
I wish you all well and thank you for listening. If you have had positive experiences with this or can think of any questions I should ask, let me know. Thanks!

Hi Carol, I am so sorry you are going thru this again. Please know I am thinking of you and sending good wishes your way.

Take care of yourself!!

Dear Carol,
What an awful (and as you say chronic) journey starting in 2002 that you have had with this awful disease
You have every reason to be scared my friend.
One consolation is that you have those wonderful doctors that you have faith in. It makes a big difference.
Your situation is not something I have experience with but I know there are some members here who have been through your surgery or similar.
You will be in my thoughts for your Friday tests and Feb 7th surgery.
Love
Gabriele

Thank you Susan and Gabe! Sitting here feeling sorry for myself....wishing I were in Carmel, Ca. rather than Baltimore trying to cope with cancer again and losing my jaw.

Carol,

I'm praying for you! I went through the same surgery and although it's not pleasant, it's totally doable. I'll be praying for peace for you and your family.

Do you know how long they will keep you asleep after surgery is done? Overnight, a few days? I was kept asleep for a day. Will they have to do a skin graft over your leg?

Please don't hesitate to ask any questions.

Carol, very sorry to hear of your news. I just wanted to add on to what Christine said about bulking up. I lost way too much weight during treatmnet. The docs were concerned and had me pour more food down the ped theg start eating when I could. Nithing seemed to work. I went to a muscle mag and and ordered some of the weight gain protine powder that these bulky guys use. I did get some stuff called "Russian Bear 5000" It has a whopping 5000 cal in a days serving, I also got and still use something called MeTrx. It is a powder you mix with milk and has about 550 cals per 16 oz. Well balance and maybe less costly than Ensure plus.
I did start to gain weight almost imediatly
Good luck on your new adventure, we are all pulling for you

Steve

Yes, they are concerned about my weight, I am 5' 8" and 130 lbs. Doesn't seem that bad to me. I bought some stuff from GNC called Spiru-Soy, mixing it in lactaid milk and lactose free ice cream....not bad...if anyone knows of anything else without milk, let me know....Thanks!
Get Catscans, MRI and blood work tomorrow, just hoping everything works out as they are planning.....surgery on Feburary 7th, gotta tell you all, I am scared!
p.s. they are putting in a peg prior to my surgery, never had one, don't know if that is good or not, oh wait I did have one in my nose last surgery and I don't want that again. not good. Thanks all! I really appreciate your comments!

pss. I love milk but all of a sudden milk doesn't like me, really missing my ice cream!

Carol--lots of prayers and keep your courage up. Your struggle is an inspiration. Are you by any chance being treated at Hopkins? I was diagnosed june 2010 and finished in September/was at Hopkins/only I know I'm really not finished.

Come on Carol, you can do it!!! Im rooting you on to gain a few pounds. Try adding more ensure, just 2 extra cans a day will help. Maybe try a hot fudge sundae, YUM!!! How about some fattening cream soups, mashed potatoes with lots of butter and gravy, or canned peaches.

Carol:
Lots of prayers and best wishes. Milk torched me post treatment for a long time and I found many of the protein powders mixed well with water in a blender. I couldn't taste anything anyway so it was all good!!
Warm regards,
Steve

Hi, Carol,

Clark had ORN and had a fibular graft, too. It is a big surgery but the results are so worth it. Now he can eat and function normally. The PEG is not bad at all. It helped my husband maintain his weight for 3 years when eating was almost impossible. You will do fine. We are all cheering you on and you have my support. Christine had a good idea about bulking up. Doesn't Lactaid make ice cream? Ummm chocolate sauce! A couple of spoonfuls of Nutella will pack on some pounds, too. That stuff is so deliciously decadent!

All my best-
Anita

Carol, I'm so sorry to hear that you are having to go through this again. My mother has had several bouts of oral cancer. She never drank or smoked but it keeps coming back. She is 79 years old and hanging in there. You can too! You sound like a pretty strong lady to me with lots of friends here and the best cheerleader in the world...Christine...she's something, isn't she? I will be keeping you in my prayers. You can do it!!!!! And, hopefully, life will be much better after it's all said and done.

Carol, I am so sorry. This totally sucks!! We are here for you so keep strong and lean on us. My thoughts and prayers are with you.

Wendy

Carol,

I am just sick to hear this. Enough is ENOUGH !! I am just in tears for you. I can't even begin to know how you are feeling right now. You have been through so much already. I will be praying for you all the way.

I just wrote to Lisa about we could not be this lucky in the Lottery. If we were you would have Won it all!! (You might want to pick up a ticket)

I really hope this will be the last time you will have to deal with this monster. I know you already know we here at OCF are all here for you.

Take care.. Love and Hugs to you.
Diane

Carol, I am sorry to hear you news... I am at the beginning of my journey with cancer, and it's terrifying all around. I just wanted to say I am allergic to milk, I am not sure if there are any ensure type products that are dairy free... though I may look into that this week. What I use as a replacement is almond milk which is awesome (the rich chocolate is a lot like regular chocolate milk) Perhaps you can mix it with a high calorie protien powder (soy or veg based - NOT DAIRY - which most of the wheys are) It sucks being allergic I miss my ice cream too. But there are alternatives out there that are good. Best of luck on this leg of your journey. My thoughts and prayers are with you.

cheryl
I just read last week something about Ensure. I am sure I read that Ensure does not contain milk even though it tastes creamy. Can't for the life of me think where I read that but Google Ensure and check for yourself before taking my word for it.

I have to take that back. Just went on the website and checked the ingredients and it does contain milk protein but then says at the bottom

"Contains milk and soy ingredients. Gluten-free; suitable for lactose intolerance".

Unsure what this means for you as I don't know what your milk allergy is. Sorry that I gave you a bum steer

I'm late to this thread and your current situation. I am so sorry to hear the news.

You know you will be in my prayers and I have no doubt that you will beat the beast again.

I'm actually allergic to the casien in milk - not the lactose. I am sure they have something that will work on me! I know I'm not the only one with allergies to milk. Thanks for the info - in will definitely do some research! Best of luck and my thoughts are with you all!