I am a first time poster to this site. I am requesting any information that the formum post can give me about what to expect during and right after my surgery. Surgery is Wednesday, June 15. Here's what I'm having done, like i said anyone who can help will be appreciated.

Diagnosis: squamous cell carcinoma of the right lower alveolar ridge, stage T4N0M0(this will most likely change after surgery).

I'm having a segmental mandibulectomy and neck dissection. If my CT scan shows no cancer than why do I have to have a mandibulectomy?

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Welcome to OCF, Debra! I sent you a detailed PM explaining how to begin new posts.

Im sorry to see you will be going thru a mandibulectomy. Its not an easy surgery to get thru but it can be done. If you are able to eat at this point, try to get all your favorites in before the operation. Especially things like a big steak, cheeseburgers, mexican, pizza and anything that is spicy. It will be a while after this kind of operation before you will be able to eat these things again. Dont worry about gaining weight at this time.


I want you to understand we are all different and will respond to procedures and medications in our own unique way. While I had my share of set backs and struggles, others have sailed thru it easily. I would say to prepare to be out of commission for a few months. I wrote out all my checks for my bills and wrote detailed instructions for my son on how to pay everything and when. I gave my dogs away and moved to an apartment near the hospital and my doctors. I had lived out in the woods about 45 minutes away. Here is a blog I made about my mandibulectomy.

I hope you will spend lots of time on the forum reading. You will find so much info and support to help you thru this.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=102049#Post102049

Debra,

What concerns me is that you do not know why you are having a mandiblectomy, it tells me there is a disconnect between your medical professionals and you. Communication is key and understanding what you are facing and why you are going to go through with such a surgery is important imho.

As Christine said, it's a big surgery and some of us have had a hard time with the after effects of such surgery, it's definitely a game changer. Everyone is different obviously so there are various outcomes but either way you should really understand why this step is being taken before you take it...look before you leap so to speak. I think a conversation with your surgeon is in order.

As far as what to expect during the surgery...well anesthesia during, then pain meds and ensure after is the condensed version. It's going to be different for everyone my dear which is why it's important to speak to your surgeon and understand the scope of the surgery. My surgeon gave me a very good idea of what to expect so I was as prepared as anyone could be at that point. The good thing is you found OCF before your surgery, its a resource I didn't have then.

Good luck

Eric

Hi Debra!

Welcome to OCF, glad you were able to find us, please ask any questions you may have. No question is silly here.

I too had a partial mandibulectomy. It definately is not an easy surgery but like others have said you really need to find out why the doctors want to do this. For me, it was because the cancer was lying on the jawbone.

I was hospitalized for 2 weeks, had a trache and feeding tube placed. I had my leg bone used but others have had their arm bone used.

Definately try to have someone there for you while in the hospital so they can help relaying messages to the nurses for you. Also, get a dry erase board to use for communication. Eat as much as you can now. My surgery lasted 14hrs others about the same give or take a couple of hours. Liek we all have said, it's a BIG surgery so you want to weigh all your options and be certain of what you are getting into and why.

Where are you being treated in Houston?

I've not had a mandiblectomy so I'm not much help on that front - however I did want to welcome you and suggest as others have to educate yourself about the disease and procedures here - if you have questions there is usually at least one person who's gone through something similar - who could try and explain. Do find out why they are removing some of your mandible. It's important at you have confidence as to why.

Best of luck - and do bri g something to communicate with when you go in - and if you can have someone advocate for you - even better,

Take care

Hi Debra

Like you I am confused by a clear CT scan when you have been diagnosed with a stage IV tumour. Can I suggest that you may have missed a couple of words and the doctor was telling you that the clear CT scan was for other areas of your body like your chest (ie no metastases) which would be good news?

You need clarification on this and maybe if you haven't already, take someone with you to listen as well. I agree with Eric that you need to have better communication with your doctors. I know this is not easy, when they use words that you have never heard of let alone understand - especially when you are also hanging on to their coat tails trying to stop them bolting out the door before you are finished. If the doctor says something you don't understand - butt in and stop them, and then ask for them to explain what they mean. I had a notebook and if I heard something I didn't understand, I handed the book to them and asked them to write it down. It forced them to slow down and use smaller words.

I would probably ring tomorrow and tell them you have questions and need clarification. They should arrange for you to speak to someone as it is against the law for them to do the surgery without informed consent. And if you don't know why they are doing the surgery, they most definitely don't have informed consent.

Good luck on Wednesday, we will be waiting for you to report in when you are able.