I am deciding whether to have surgery which involves very difficult procedures or to have palliative treatment. I wowld like to hear from anyone who has chosen this treatment. What is it like and are you satisfied with your decision?

Hello Carol,

What type of surgery are they suggesting for you?
Is there a chance this procedure can cure you?
Normally they don't talk about pallative care until all options have been tried without success.
I have a reoccurance and am receiving pallative care in the form of chemo. Already had 15 hour surgery followed by 33 IMRT radiation treatments.
(my Max) I am receiving chemo in the form of Taxol & Carboplatin. After two, three week rounds of chemo the follow up MRI showed a noticeable drcrease in the tumor. I made the diffucult drcision to continue this treatment.I plan on being around a long time.
We get down at times but I always get back up after a few days and say "Why Can't I be the one who survives this" I think I can!!!
One thing i've learned is the medical profession as it applies to ORAL Cancer is far from perfect, More like trial and error.
You can read about people with the same symptoms
that end up with completely different treatment.

It's aways been suggested on this forum to get to a comprehensive Cancer center with a medical team from different specialties. This is the most informed decision they can offer you.
Another thing said here often is " Throw averything at it the first time" This is one nasty diaease.
As far as being satisfied with my decision to take the pallative care I am happy with my decision. It at least gives me more time with my family, To put all my affairs in order and enjoy every day I have. If I could will this away i most certainley would. Sometimes we don't control what happens to us. This it appears is my case.

Best of luck, Danny Boy

Dammy Boy, Thank you. It sounds like you have the same type of cancer that I do. Maybe I am wrong but it sounds like the surgery is not worth the effects afterward (resection of the jaw and palate). There are so many things that I wanted to do but if it is "check ou" time, other things become more important, family, etc. My jaw is locked, was yours? And did the radiation and chemo fix that? Haven't been able to clean my teeth well for nearly three months.
Thank you again. Please keep in touch.
CArol M

Dear Carol,

Welcome to the OCF site. I'm sorry you have to be here, but hopefully you'll find lots of help and support.

Can you give us some background on the type and stage of your cancer, when it was diagnosed, and what has been done so far for treatment? With that kind of information, we can try to give you the perspective of other people who may have been through similar experiences.

Also, I have to re-emphasize Danny's point about being seen at a comprehensive cancer center (if you're not already). If you need a list of them, it can be found on this site under "Other Resources".

Please stay in touch.

Cathy

Carol M, I have jusr had the surgery, neck dissection with jaw replacement. Bone taken from leg to re-build the jaw. This is one tough surgery please email me if you have questions,,,also can you tell us more about what kind of cancer and the stage...Always Miss Vicki

Hi,

My name is Christy, and I am new to this forum. My grandma was just diagnosed with oral cancer. She is suppose to be having another biopsy on September 1. My question is....why are they not cutting out all the cancer in her mouth on September 1. She was checked on Tuesday and the cancer was not in her nose area yet. I don't think it is in the neck yet either. From the research I have done I think she may be at stage 2. We are still waiting for the CT scan also. It takes so long for all these tests to come back.....meanwhile, her cancer is growing so fast. She first noticed the little sore on the weekend before August 2 (day she had it looked at). The doctor put her on an antibiotic. The sore got bigger. She was on holidays and saw a doctor two more times. They didn't do anything either. When she got back from holidays she went to the hospital and they did a biopsy there (August 17). Her face is swollen.....now right up under her eye. She is 74 and her health is not so good. If they are not taking all the cancer on September 1 does that mean her cancer is other places too? She had breat cancer over 10 years ago.....no reaccurance. What should I expect? I don't understand why they don't proceed faster.....the time she gets surgery her stage 2 cancer will be stage 3 or 4.

Hi Carol,
I had the jaw surgery (jaw removed, replaced with bone from leg) 16 months ago. I also had radiation. I had a quick recovery from the surgery, out of the hospital in 11 days and eating food within 2 weeks of the surgery. The radiation is the cause of most of my complaints. The surgery is doable and is well worth it if you can get rid of the cancer. Keep in mind that I was 41 at the time of the surgery.
Good luck with your decision.
Minnie

Hello Christy & Grandma, Welcome. Your grandma age, concerns me. Bless her heart and yours. This is a destroyer of a disease.. Please keep me informed with your grandma's condition. I cannot help but get angry when this hits the great mentors in our lives....Miss Vicki

Hi Vicki,
Wondering how YOU are coming along....Love, Carol

Well thank you CAROL, I am hanging in here.. Which is saying a whole lot..I went to my first speech theraphy session yesterday. I can talk with a passy muir value. But I can't breathe with it on. So they are going to try to get this removed if they can...If not get the trache out, then get it to fit right. The hole is so big that there is a lot of air coming from the underneath the trach, so there is a lot of air that is hiding the sound of the voice. Plus I have to stop so much to talk , to breathe. Boy this is something else, one thing after another. I feel great!!!!!!!! I really do. It is just that I have these talking, eating , healing problems...But I feel Fine.......Make sense...Miss Vicki