It has been a week since I saw a doctor at the cancer center and now great timing I know all kinds of questions are flooding my mind. Also reading about survivors of probably worse than I am going to have to go through as far as I know (at least until the cat scan) amazes me at their strength. I am not sure as much as I want to have the strength of the people on this site I just don't know where to draw it from. I probably am not utilizing this site properly cause I am reading about people with "peg tubes" and most people have had to have radiation or other treatments so I am kinda still in the dark as to what to expect from what I am scheduled to have done I don't know what the terms are so not sure if I am reading even pertains to me. It is great support for sure. I am needing information for coming home I know I will be taken care of in the hospital but I am on a limited income where not much is covered and have a month to prepare and gather and not sure what I am going to need when I came home as far as eating, drinking I don't know what to expect after the surgery that is scheduled all I know is about the feeding tube and the breathing tube ...to me that is scary enough we didn't even get into anything else I was just so overwhelmed with the surgery. At this point I would really appreciate some imput. I know I could get the same information from the nurse involved but I fear that would take too long at this point my stomach has been so upset today just can't keep anything down. I have just had a bite of reality with my journey.

Thank you for your help

Dianne

Extremely

Dear Dianne,

What I am reading in your letter sounds like you need INFORMATION from your doctor. It is only fair to know what you are facing and what he is thinking. Our minds are our worst enemies when they are left to imagine the worst!! I can understand your need to try to read as much as you can, but you are going to burn yourself out trying to cover all of the "what if's."

Start with the basics: Where is your cancer located? On your tongue? That's what it sounds like, since you describe a graft from your arm. There are plenty of people here who have undergone that surgery.

Take a deep breath. You can't change anything, and you will wear yourself out.

I take it from your note that your doctor has said something about a feeding tube (the PEG tube) and a breathing tube (the tracheotomy tube.)

Somebody else jump in here......It sounds like maybe your tumor is far back on your tongue (???) and he is wanting to protect you against the possibility of swelling from the surgery, so he will plan to place a breathing tube for a few days. I don't think that most people go home with those. (I am not a doctor, of course....I'm just trying to get some information.) He might be expecting you to have some trouble eating at first because of whatever surgery he has planned, and hence, the feeding tube. Perhaps if he is going to do a graft to your tongue, it will take some time to allow it to heal (maybe he doesn't want it disturbed by eating for a while) and maybe then it will take a bit of time to practice with your "new" tongue.

OR.........Maybe this is not what you are going to have at all! Let us know more of what you know.

You need more information, and I suggest that you call the doctor's office, and tell the nurse that you really need to talk with him, and either have him call you or give you an appointment just to talk.

You can't adjust to what you don't know about!!

Tell us what you do know, so we can start to help you understand and to feel better about it.

XO

Dianne, I agree you need more info. from your doctor about *exactly* what is going to be done and why. If you are getting a feeding tube that will be used to help you feed yourself once you leave the hospital, it is probably what is called a "PEG" tube or sometimes just a "G-tube". You should clarify with your doctor why you are getting that and how long you will need it for, as well as what sort of stuff you should be putting down that tube.

The "flap" means they are going to take tissue from somewhere else (usually your leg) and ue it to replace some of the tissue they will remove in the surgery--this is often done if they have to remove a lot of tongue so that you have what works as a functional tongue to help you swallow after you recover. Again, clarify this with your doctor if you don't understand the details.

I understand you may have gotten so scared as the doctor was talking you missed a lot the first time. That is NORMAL so tell your doc that was what happened and you need to get some clarification. Write out the questions you have ahead of time. If you have a friend who can come with you when you ask the doc questions, bring them and see if they will even take notes. Or ask your doc if you can tape record the questions and his or her answers so you can go back to listen again afterwards.

You should also ask if there is a possibility that this surgery will be followed by radiation. They may not know until they see the results of your neck dissection during the surgery but have them explain what the possibilities could be if you want to know "what next".

And as for people here having strength you don't have: that is what we all thought when we came here newly diagnosed. One of the great secrets about what it is to be human that you do learn in the cancer battle (if life hasn't give you some other reason to learn it already) is that we all have WAY more strength than we know. Even though you sound very scared, you will get through this. I know I was terrified and I did.

Nelie

Breathe deeply and relax. You are at a great place for information. I agree with the others about getting alot more information about your surgery - I am surprised that they didn't explain more to you, and yes, you should contact the doctor or nurse for another appointment to again go over what they are planning. My advice is to take someone with you - family or friend - who - guaranteed - will hear more/different things than you will.

As far as what to expect at home post surgery? If you need it the hospital can arrange for a nurse to visit you - homecare - to deal with dressings and make sure that your tracheotomy is healing as expected. When I was in hospital in Winnipeg, I was also visited by a social worker who enquired as to who would be at home to assist, patient needs, etc. No doubt that will be the case for you as well.

I hear that is a great Cancer Centre in London so I'm sureyou will be in great hands. Keep posting.

From a fellow canuck!

Donna

Thank you for your answers I know I am not very clear it is just they told me they were doing but it was if it was so matter of fact and sorry if I mislead anybody I have been reading about a peg tube but no mine is supposed to be through the nose. The cancer is on the floor of my mouth from what I am understanding they are going to remove the whole floor of the mouth and something about the tongue (base and right side) then removal of lymph nodes from what I understand the doctor doesn't seem to think it has invaded there yet. Most of the cancer is on my right side but they are going to disect both sides of my neck he said to be sure not all of the nodes but some of them. I think the doctor just wants to move on this and I am thankful and if information changes with the cat scan then we go from there at least he has surgery booked. I don't know if this helps clarify things just like mud lol. I have yet to have a cat scan before surgery to determine how far the tumor has travelled. I believe that the doctor set this date with what he knows and if there is a change he still has the date set. I am needing to know more about the disection too. I am trying to wrap my mind about what I am up against personally what kind of mobility after surgery. What kind of pain how is it handled? From what I am reading different people are up and about sooner than others. My daughter is getting married in May 2009 and I wanna be able to help not just be there we have so much to do before then. I also am having a lot of life changes some good (today I quit smoking) and some well they just hurt (like having to give up my dogs). I find myself being angry too very angry.
Because London is a ways away I am going to have to set an appointment with the nurse and or doctor when I go for cat scan. I don't think they will talk over the phone. I also have no family doctor and it will probably be more impossible to get now. I just gotta figure out where to get the strength to do this. You people are all rocks and just amazing people. I know I am a wuss in the worst possible way. They had to take a picture of my throat putting the camera through my nose,I freaked and that was actually nothing except for my extremely high gag reflex. (It is gonna be my worst enemy through this ordeal). This is also what is concerning with the feeding tube through my nose. I have had one before when I had a gastric bypass and they had to remove it early cause it bothered me so much. I know strength comes from within but I don't feel very strong right now. Everyone says its just there and it comes so I am waiting. I am trying very hard to live in the here and now but still gotta plan for things and make arrangements.

Thank you again for all your help
Dianne

Dianne:

Hang in there. Please try to calm down, this isnt going to do you any good being so upset. You are sick and the doctor is going to fix it. You do have the strength too, you just dont realize it yet. Do you have a caregiver or someone who will be helping you? Will your daughter be helping you?

Here's a few things I did to prepare for my treatments. I started cleaning like never before, every room floor to ceiling. I just figured with 2 teenagers in the house the cleaning wasnt going to get too much attention while I was sick. I also stocked the house with groceries that were easy meals for my kids. I bought alot of soft foods for me like applesauce, pudding, soups. Look for low sodium items as salt can burn your mouth. I got all my bills in order and set up direct debit on them so I wouldnt have to bother writing checks. I got the oil changed on my car and got it inspected. I also got my chimney and furnace cleaned. Sorry to hear about your dogs, I did manage to keep mine but it wasnt easy.

I hope these ideas help you. When I would worry, I would decide it wasnt going to get the best of me and I would go clean or do something positive.

Has your doctor(s) said anything about radiation or chemo post surgery? I and I stress the word I would want a second opinion on the neck dissections as it sounds like they are just going to do that surgery just in case and if radiation is planned they can target those areas and in my case I was able to avoid any ND's.

Hi Dianne
Can you tell us when you saw your surgeon, Dr. Fung, was it at his clinic or did you meet the whole Head & Neck team at the Cancer Centre? Did you get a folder filled with information that the Cancer Centre gives to new clients when they register at the Centre? If so you should have lots of contact numbers to call, and yes, they will call you back. I know Dr. Fung has a Nurse Clinician working with him and she always responded promptly to voice mail or pager messages. I know she would be happy to answer all your questions. A well informed patient is a more relaxed patient and in the best position to work with their treatment team.
My husband recovered very quickly from his surgery, with no residual pain and was out of hospital in 1 week. Post surgery you will be in a special 4 bed observation room with 1 nurse per patient for your most acute phase post operatively and then 1 nurse per 2 patients as you are more stable. You will also have a pain pump for the first couple of days i.e. you push the button as you need it and you are admisistered the pain medication through your intravenous line. You will receive excellent care, rest assured.
Make a list of all your questions before you call or see the nurse, and of course ask all the other ones that come to your mind as you are talking to her. Good luck.

The best place to get your go from is deep inside yourself. I was told I would have the flap , the tubes and other things. In reality I ended up with none of that. The Dr is probably letting you know the worst that can happen. Go in with the determination that you won't need all of it. I can't say I came out perfect, but I did come out and am still among the living. You are in my prayers.

David, This case is different from yours, though. They knew from your physical exam and CT scans that you were stage IV and so would have radiation and chemo no matter what. She has said she has no signs of cancer in the nodes based on a physcial exam and it sounds like the doctor will be using the CT scans, and then the results from the neck dissections as well to determine if that is really true when they are looked at more directly. If it is, they won't need to do radiation and chemo most likely. That's why the neck dissection. if the neck dissection is not done, there's a 30% chance they could be wrong about the nodes being cancer free, and she would be undertreated and more vulnerable to a recurrence.IOW, In this case, the doc needs the information from the neck dissection to decide whether she should have raidaiton and chemo. That wasn't true in your case.

Nelie