Was diagnosed with stage 4 floor of mouth last week. Met with a team of doctors and they think they can get this stuff outta me but it gonna require a major surgery called mandibulectomy and fibula free flap reconstruction. I will also have about 40% of my tounge removed. Some of my lymph nodes showed up hot on pet scan he will know more when he gets in there. Says hes gonna remove alot of tissue and vessels in neck area. With the surgery and reconstruction hes talking like a 16 hour surgery. Not sure what scares me more cancer or long surgery. Seems like an awful long time to be under. He will be doing surgery himself except for removal of some teeth. Is that normal? I know im not the only one to ever have this done. I would like to hear from others who have been in the same boat as me. I need to get as much info as i can to prepare myself for this life changing event from people not just the internet. So many questions. Recovery. Pain. Disfigurement. When i might be able to continue a somewhat normal life.
A few weeks after surgery they wanna hit me with combo radiation and chemotherapy im sure that will be round two
Just as bad. He said this will start in about 2 to 3 weeks
Any advise or tips on this would be very appreciated
Thank you
Mike young. Hazel park michigan

Mike, welcome to OCF! Im sorry you have a need for our services! Sounds like you have alot going on now. Take it day by day and do your best to stay busy doing positive things to help make the time pass easier. Im sure you have friends and relatives coming out of the woodwork offering their help. Tell every one ... when the time comes you well let them know what they can do to help. Start a list and write down everyones complete contact info to use later. Its a good idea toi try having people take "shifts' staying with you around the clock during your hospital stay which is likely to be at least a week, possibly two. Even facilities with a "no overnight" policy often welcome friends and family who want to stay with their patients and help be their voice. Try to limit visitors as your resistance is likely to be compromised and you can NOT afford to pick something up from anyone who visits, kids are especially germy from being in school. Your helpers can interact with ther hospital staff o n your behalf and arrange for pain meds when you are in pain.

I suggest reading both here on the forum and many of the important subjects on the main OCF site as well. By learning about your illness, you will make for a stronger advocate.

If you have not already done so... seek out a second opinion preferably at one of the top comprehensive cancer centers (CCC) in the US. Surgeons cut and once its been removed you can never be pout back together exactly as you had been before so choose wisely!!! With such a complicated major surgery, you will want a highly skilled surgeon who regularly treats oral cancer patients and is not new to this sort of complex issue.

Best wishes!!!

Hello Michael!
So sorry to hear about your diagnosis. I am VERY new to all this as well but I agree with ChristineB on trying to seek out a cancer center to make sure that your care is coming from the very best in the business. I attached the link below. I just had a fourth of my tongue removed and a partial neck dissection and it was done at a cancer center with the best of the best in treating head and neck cancer and that knowledge went a long way to make me feel at ease.

https://www.cancer.gov/research/nci-role/cancer-centers/find

Welcome Michael, I ditto what Christine said. Come back often when you need to ask for advice or need support. We have all been where you are today, and made it through. There are many who have been through the surgery and treatment you are facing and hopefully they will pop in and give you some information.

Thank you Christine B,Virgo,and DeniseG
Well im down to two weeks before surgery starting to get very nervous. I feel confident that the doctors are going to get me out of this bad place im in
I will be having my surgery at the Rose cancer center at william Beaumont the surgeon has alot of experience with head and neck cancers and i dont think they would waste all there time and resources if they themselves didnt think they could do it
I do hope to hear from more peopl who beat this terrible disease
Thanks again
Mike

Mike,

I just want to wish you well with your upcoming surgery! You’re right, your surgeons wouldn’t be doing surgery unless they thought it was curative.

Try not be be guided by any on-line stats. If i did, I probably wouldn’t be where I’m at according to some of them. Although I had a different cancer, tonsil with metasteses, it was 7 times, but the doctors never gave up on me! I’ll be going for my five year Scan soon, and hopefully considered cancer free, although I’ll be 10 years out from my original diagnosis.

Best wishes!