On January 31st my dad was diagnosed with Stage IV SCC Oral Cancer of the RetroMolar Trigone with invasion in the tonsil, soft pallete and masticator space. He will have surgery on March 7th to remove the upper and lower jaw and a radical neck dissection. He will have soft tissue reconstruction with tissue and muscle from his chest. He will have a trach and a feeding tube. There will be a GI surgeon, Oral Cancer surgeon and a Plastic Surgeon.

He is 70 years old and has never smoked, drank or chewed in his life and has been relatively healthy so this has all came as a shock. I am an only child, so my mom and I will be his caregivers.

I was wondering for others who have been through this type of surgery approximately how long did the surgery last? Will he be in a medically induced coma? Approximately how long was your hospital stay? Were you able to come straight home or did you need a rehab facility? How long did you have the trach? I know he will be disfigured, but will he still look somewhat like himself (I have teenage children I am trying to prepare)?

I know each case is unique, but I just thought maybe some others experiences could help my mom and I prepare. My dad becomes very apprehensive if we ask the doctors to many questions in his presence.

Welcome to OCF, Candy! I will try to give you some info. Of course we are all slightly different and will respond in our own way.

I had my lower jaw removed (mandibulectomy). This procedure was a 10 hour surgery. Sounds like your father's is more detailed which could require an even longer operation. I was kept in a medically induced coma for 3 weeks. But that was due to complications I had. Most patients with a mandibulectomy can be kept in a medically induced coma for up to a week. I ended up staying in the hospital for 2 months but again that was from complications. Ive seen many others go thru this and end up being kept in the hospital for 2 to 3 weeks. Then they usually go home. I refused to go to a rehab facility but looking back I should have done it. After being away from home for so long, I wanted to just go home.

As far as disfigurement goes, it does not always happen! It happened to me and a couple others I know of but I also know many more who have come thru this and look very good. You can barely tell they had anything done. Plastic surgeons can do amazing things! It will be a full year after the surgery before any reconstructive surgeries can be done so your father will need lots of patience with this.

I would suggest your father make all the necessary arrangements as if he was going to be away for 3 months time. It is very possible! Im not trying to scare you but this is major surgery and is quite invasive to say the least. Recovery can take many months. I was so weak that I needed physical therapy to just do simple things like dressing myself or walking to the end of the block. It is not easy but it can be accomplished and your father can go on to live a good full life.

Please feel free to ask questions and I will help you get thru this.

Candy to answer some of your questions i about 2 years out from a rmt 55 at time of diagnoses the surgery part went very
well i had all my teeth removed & my trach placed the evening before the main part of my surgery approx. 10 hr.
Most people on first glance most people dont notice that i have had major surgery on my face. But at the same time some close but distant friends dont recognize me.
I in was the hospital 10 days. I was under my brothers care 6 weeks my trach was in 6 months ng 5 weeks peg 12 months.
the radiation made me weak for approx.1 year with gradual stength increase after that.
but I would keep in mind this time line is closer to a best case. hope this helps JOE

Hi Candy
I have no experience with the surgery so cannot comment. However, I have a suggestion for finding out what you need to know without freaking your Dad out.

People have different reactions to illness and some just want to get through it and don't want to know too much in advance. Others want to know all the ins and outs of everything so they can prepare themselves. Doctors are used to this and it may be worth requesting either that the first half of the appointment is with your dad and the second half is with you and your Mum (if she wants to know more) or that you have an appointment of your own to discuss your role. Also, these doctors are happy to answer questions by email or put you onto someone who will.

Do you have a co-ordinator? We had a nurse who looked after a lot of our issues and answered all my questions outside the hearing of Alex who didn't want to know anything.

I believe that the carer(s) have equal rights to know about prognosis, treatment and future management as well as possible complications, likely issues but they do not have the right to force this information on the patient if they don't want to know. You clearly already know this as you have already reacted to your Dad's apprehension by not asking the questions you need to know the answers to. I wish I had had your sensitivity and wisdom at the beginning (I am getting better at it now though :)).

Candy, I'm adding my support and commending you for being there for your dad. This is going to be very tough for him, but also for you. But I know your help will be invaluable. Christine is one of our real heroes here and has give you terrific advice, and Joe and Klo also have great things to say.

We're all with you and your father. Anything we can do to help, don't hesitate to ask.

My thoughts are with you.

Thank you for your responses. I appreciate the information from people who have been there.

My mom and I were told once we get to the hospital (it is 1 hour away from our home) where the surgery will be there will be a social worker/coordinator helping my mom and I learn more and how to deal with his particular situation. I figure at that point my dad will not have to hear all the details and I will be more free to ask the questions I have.

I am just trying to prepare myself as much as possible. I know we are in for a long haul. Other people who have not experienced this type of cancer keep telling me it will be just fine and it is not a big deal. I know they mean well, but I don't think they get that the recovery will be very long from what I have read before this forum and here also.

Thank you for sharing some of your stories. I really appreciate it. It just feels so overwhelming at times, but it is nice to be here with people who understand.

Candy its hard, but you will get through it. The people who've been there - are best to answer your questions but I wanted to wish you luck, and offer you a welcome. also since communication will be hard for your dad remember to bring a pad of paper and pen... Take care and many blessings to you.