Hi, I am also new. Diagnosis confirmed last week of stage iv tongue cancer, which has spread to the lymph nodes on both sides of my neck. I meet with surgeon tomorrow to set a surgery date, and I'm in a panic that I won't ask the right questions. Any advice?

Welcome to OCF. I would suggest you read both the forum and main pages to educate yourself. We will help you thru whatever treatment plan your doctors come up with.

My advice is to eat all your favorite foods now and then have seconds. Dont worry about gaining weight you will likely lose some with whatever treatment you have done. Anyone who offers their assistance to you tell them when the time comes you will let them know what they can do to help. Even small things like running the vacuum or taking out the trash is a help when you are feeling lousy. You will want to line up several helpers to provide transportation, help with housework, etc. Always take an extra set of ears to your doctor appointments and take notes.

Best wishes!!!

Hopefully all goes well today. Sorry we didn't get to you with too much help before your appt.
In the event that your appt is later today...
Ask if they have tested for HPV.
Have blood work done to get a thyroid baseline.
What type of treatment are you getting? Are they going to do any induction chemo?
Diflucan for prevention of thrush.
Miralax for constipation from the pain meds.
Are you getting a port and a PEG?
Christine is right...EAT, EAT, EAT!! Once you begin tx things will never taste the same. At least in the near future, your sense of taste will eventually return. So eat your favorites and then eat them again while you can!!
Just some things right off hand.
Good luck today. We are here for you. You have a rough journey ahead, but we have been there and you can do it!! Do you have help in your home?
Keep us posted,
Kathy

Thanks. My appointment is still this afternoon.

While I would love to take your advice about eating (I loooove to eat), unfortunately, my tumor is big enough that it limits what I can chew, and swallow. I have lost 20 pounds in the last month.

What I know is that surgery will be in 4-6 weeks (I'll find out the date today). The neck dissection terrifies me, along with the possibility that they will need to dissect my jaw. Rad/chemo after that. PEG for a while, but who knows how long????

Everything I can find, research wise, is pretty general. I am a lawyer with my own firm (opened it one month before I was told to get a biopsy by a dentitst), and I'm afraid that will all fall apart. Will I be able to do some limited work from home? Are the good days, actually "good" or just not crappy?

My family is far away, but I have great friends. Also a bit terrified that at 39, my parents will decide to move in. I love them, but I don't think I can handle that too, and have no idea how to tell tham.

I'm babbling a bit, but it's all the things I haven't wanted to burden my frinds/family with.

Thanks for "listening".

Tina

Tina,

I know this is going to be hard to do but please try and calm down. Many of us were Staged a IV and had this Tx and are almost normal a couple of years out. Please read my Signature Line below. First off how were you diagnosed? Where is your Primary tumor located. Did they do a FNA on both sides of your neck? Did they do a biopsy on your Primary. What exactly have you been told and by whom? The more info we know, the better we can share our experience and knowledge.

I would NOT suggest you tell anyone "NO" when they offer their assistance. Now is NOT the time for having too much pride not to accept some help. Everyone needs a caregiver, especially if you are going to have a major surgery. Even if they just answer your telephone, get your mail and make sure you are getting enough calories and hydration. You may sail right thru everything, some do but others will struggle and end up hospitalized (that was me). Believe it or not you may be strong now but when the going gets tough you will not be yourself and need help and get this.... you will be soooo glad your parents are there. As I suggested in my previous post, dont tell anyone no, tell them all when the time comes you will let them know what they can do to help then write down their name and number.

I know you say your eating is compromised right now but you MUST get adequate intake or you will have a harder time of everything. Every single day you need to take in a minimum of 2500 calories and 48 oz of water. This is especially important during chemo and radiation. I know it sounds like way too much but its not, in fact if you can take in 3500 calories daily that would be even better. You wont gain weight either. This is because the cancer is burning up calories and your body is fighting very hard to ward it off so its burning them up too. Once treatment begins then your body is trying to heal which further burns the calories like crazy. Push yourself now to eat and drink. It will become more difficult down the road so get used to this. You will have a much harder time if you dont listen to this advice. Trust me, you do NOT want to end up hospitalized for malnutrition and dehydration. Even with having a feeding tube it can happen (that was me again). I didnt have a caregiver watching my intake so I would skimp and this is why its so important to have someone there for you every single day.

Your work may be possible from home or you may not be up to it. That is secondary right now. Your health is most important and this needs to be taken care of ASAP. Cancer has a way of becoming top priority over everything.

Best wishes!!!!

Hi Tina,
It is nice to meet you. I am sorry you have had to come here, but these forums will be a lifeline for you over the next few days, months, even years! Regarding your parents, in my story, I had just moved in next door to my ageing parents 2 months prior to being diagnosed, to help them more and to hopefully make their life easier and to make it more convieniant for us to do the things they could no longer do or needed help with.

2 months later I was diagnosed with tongue cancer! So guess who was helping who. I really don't know what I would have done if not for my poor 72 year old mom. I remember her crawling in bed with me at the hospital, just holding me while I cried myself to sleep. This is not a treatmnet that you are going to just sail through unscathed. It can be absolutely dibilitaing. I could not even literally speak for myself for over 3 surgery's. I must have spent a total of 20-25 days in the hospital, my family wouldn't leave me alone for even 1 night in the hospital, becouse when someone like us presses the "help" button from our hospital bed, the nurse will ask you over the intercome "How can I help you" guess what, you will not be able to speak to answer her. Now am really not trying to frighten you, but we have people here who had help to get through and people who have been on their own. They will back us when we tell you allow people who love you to help as much as possible. My advice is to listen to Christine...You will need all the help you can find. I don't mean to sound pushy or anything, I just sincerly want you to have everything you may need to get you through this horrible disease/treatment.

OK, so here is my story:

I knew something was wrong in March. I had a persistent sore throat. Went to my family doc - she said it was nothing. Went back in May she ran some blood tests, all normal. Went back in July because I could feel something on my tongue. She said it was a canker sore and tried to burn it off with silver nitrate. The following week, I went to a dentist, who told me I needed a biopsy, and I was ultimately referred to an ENT.

Biopsy confirmed stage IV tongue cancer. Pet scan confirmed that it had spread to the lymph nodes on both sides.

Surgeon today said he will be doing a modified radical neck dissection, and removing the nodes in zones I to V, along with partial glossectomy. I will be under the knife in 4 weeks. Six weeks after surgery, I start chemo/rad combined for 6 weeks. I don't know which chemo drugs yet.

I am 39, and was a smoker (threw them out when I was diagnosed). I got a prescription today for oxy to help me eat. I'm hoping that works. I have been making my own protein shakes, but I have been pretty run down (tired) so I don't think I am getting enough. I'll be meeting with a nutritionist soon to help with that.

I have a wonderful group of friends here who have all offered whatever I need. I just don't know what that is right now. I'm just going from appointment to appointment to appointment, and taking notes and doing research.

My parents have various health issues (my mom had 3 heart attacks last summer), and I don't want to compromise her health. I know I will need help, I just don't want to over-burden them, and cause her to get sick. I can't imagine the guilt of that on top of everything else.

I have been calm to everyone else, except here. Not sure how long that can hold out. I have full faith in my surgeon. He is a pioneer in Canada, and he has said this is "fixable". I know I can do this, but I am an admitted Type A personality, and hate the fact that have no control over this. Struggling with that.

If you were in the US I would be telling you to go to what we call a Comprehensive Cancer Center and get a 2nd opinion. My only concern are the bilateral neck dissections, whether or not they are needed. I know our cancers are probably caused by different agents but Moffitt, a top rated CCC in Florida, was the 5th doctor group that I had seen and they told me they would not advise doing a ND on me as the chemo/rad would do the trick.

Tina,
Did they tell you it is a Base of Tongue primary?
Kathy