My husband (32) has just been diagnosed with tongue cancer and I am so scared - Oral Cancer Support

Three weeks ago began the journey of cancer. It started with a horrible ear ache and turned into a nightmare. I am the wife and soon to be care-giver of wonderful-young man with tongue cancer. I know that this is not happening physically to me, but the pain that I am feeling is indescribable. I need to hear from some other wives, who have gone or are going through this. I need some support.
Jennie

Hi Jennie and welcome to the forum. 32 is a young age to go through this and it is a nightmare. There is hope however and don't lose sight of that. First you MUST go to a Comprehensive Cancer Center if you are not already. There is a list of them in the resorurces part of the site.

I was a primary caregiver for my
father who had lymphoma so I have walked in thoes shoes as well. It is, in many ways, far more more difficult to be a caregiver than a patient so take good care of yourself. Eat well and get lots of rest. If you are emotionally overwhelmed ask the doctor for some anti-anxiety medications. There are also support groups for caregivers. Start building up a list of people who can assist with driving, respite care, etc. Church groups are very good at those sort of things.

Go to all of the doctor visits and take VERY careful notes. Much information will be given in a short amounbt of time and many decisions will have to be made quickly. It is vital to be your own advocate. You want to know what all of your options are and the risks and benefits of each. We are here to help you in any way we can.

The hospital social worker should be able to help with your benefits and entitlements as far as the financial aspect of it goes. You will be entitled to substantial discounts for gas, electric and lifeline telephone rates. Estate planning and advanced directives are always a good idea at any age.

It is natural to be overwhelmed, especially at the beginning before all of the diagnostic information, testing and treatment planning is finalized. Take a deep breath and keep us informed so we can help.

Jennie:
Gary gives excellent advice.
If you have a church family, rely on them heavily. You and your family will be in our prayers.
Darrell

Jennie,
I was in the position that you now find yourself almost exactly 3 years ago. I think that the beginning of the whole episode was the worst. As time goes by, you just settle into what needs to be done as far as being a good caregiver.

Try to take some time out from what can be an all-consuming job. Take a walk, spend some time with friends...anything you can to regroup your strength. This is such a stressful time for you, as well as your husband, that you need to take care of your own health, too. At one point, my husband's doctors were threatening to start a chart on me and start making me do the weekly weigh-in to track weight loss.

I want to let you know that my husband is now at 3 years post-diagnosis and back to his full energy and enjoying life to the fullest. There can be light at the end of the tunnel.

This forum can be a great resource for you. There are many sympathetic and knowledgeable people on here that can help you as you make your way through this.

Best,
Anita

I cant tell you how thankful I am to have found this forum. The oncologist told us that Erik is the youngest patient that he has ever seen with this form of cancer, he is baffled because, as with many of the tongue cancers on this forum, Erik has no risk factors. We will be having surgery on Wednesday Jan 11th they will be removing about a third of his tongue and having a lymphectomy. Im sure my jargon isnt all correct yet, it has happened so fast. From diagnosis to surgery. He is T3N1M0, I hope that is right. Two weeks after he is released from the hospital, he will start chem and radiation and Eribitux. I am quitting my job, and have had a real peace about this decision, not only will he need me but we also have an 11 year old daughter and 8 year old son, who will need some extra mom time. I guess it is all of the unknowns at this time, I am thankful for this site, it gives me a little insight into what the future holds. I do have a fabulous church family and am leaning on them a great deal right now. I am wondering how difficult is this surgery going to be? Will he be in alot of pain after? How will he get pain meds, if he cant swallow, and what is a peg?

Jennie, I'm so sorry your husband is going through this at such a young age. I don't know where on his tongue the tumor is, but mine was on the oral tongue on the left side and I had about 1/3 of my tongue removed as well as a selective neck dissection. I dreaded the surgery--I was really terrified of it. However, I healed from it unbelievably quickly. Within two weeks I was eating almost everything I had eaten before the surgery and my speech was almost back to perfect again (I am a person who loves to talk and you couldn't stop me just by removing 1/3 of my tongue!)

The radiation and chemo were much much harder though, for me and for most people I think. A PEG is a feeding tube that is inserted directly into the stomach. The operation to have one inserted is a simply one requiring at most an overnight stay after--though he may feel like a mule kicked him in ths stomach forn a few days after that. It will be his lifeline if he can't swallow--both food and meds can go down a PEG although there are other ways to get pain meds too such as patches.

Keep asking questions here, there are so many people who have been through it willing to help.

Nelie

Neli
Your cancer sounds almost exact to Eriks diagnosis. They will be removing 1/3 of his tongue, and neck dissection. His is on his oral tongue and on the left side too. They want to put the peg in while he is in the hospital. Did you have to have a trach when you had your tongue surgery?

Jennie, John had his peg put in during his cancer surgery also. The peg is generally not a big deal. By the time he leaves the hospital the incision shouldn't bother him too much and will just need to be kept very clean. Getting him to use it faithfully may be a battle for you[depending on his personality] so just be firm. He will need the nutrition and hydration. I know how scared you are. The bottom line is YOU are gonna have to be strong for your whole family! It's a really big job. Let us help you through it.

Jennie, A peg is a small plastic appliance, a tube really, surgically inserted into the patient's stomach. The tube is short, it goes straight from the outside of the stomach, through the skin, muscles and stomach wall, into the stomach. It is held in by a small balloon on the inside of the body filled with saline.

The peg tube is a way for those of us with compromised throats to eat. Liquids are poured into the peg, and thereby, directly into the stomach. There are many different liquids that can provide very balanced nutrition through a peg tube. I have lived on mine for nearly three years now. Medicines, water, food, any beverage can be poured directly into the stomach. Its an essential for maintaining strength while in treatment.

You and your husband are in a really scary time right now. It will get better. The fear starts to focus after a while. You get kind of mad and really determined. You start really listening to the docs, paying attention to their advice.

Get more than one doctor advising you. Don't accept their suggestions about treatment without questioning them. Ask them about other options. If they "poo-poo" your questions, get different docs. Get to a cancer center for advice. Talk with docs who have treated THIS type of cancer before - its a little different. There are MANY good ways to treat this type of cancer, so don't 'buy' the first one they offer you. Ask questions constantly.

You, your husband, your children, your support group - you can do this. We here have beaten the beast and we are many. You will prevail. Listen carefully. Ask questions. Fight hard. Be strong. We are with you. Tom

HI JENNIE ,SORRY TO HEAR YOUR BAD NEWS WE HAVE ALL BEEN THERE .PLEASE TAKE CARE YOU NEED YOU HEALTH AND STRENGH TO GO FORWARD THIS ILLNESS IS A BEAST I THINK MOST PEOPLE WOULD AGREE .YOU WILL GET THERE WITH THE HELP OF GOD ASK ALL THE QUESTIONS YOU NEED TO KNOW STAY POSATIVE YOU BOTH WILL BEAT THE BEAST...ALL MY THOUGHTS ARE WITH YOU ...GOD BLESS..MAZ

Jennie,

You've gotten lots of good advice above. Please remember you'll always get plenty of support and suggestions here, so feel free to come back any time with your concerns.

There can be a range of reactions to the treatment for tongue cancer, so it's hard to predict how your husband will respond. However, I think most of us who had both surgery and radiation will tell you that the surgery was a piece of cake compared with radiation (or chemo with radiation). I was 39 when I was diagnosed, and my symptoms had been virtually ignored by two doctors -- even though I made a point of asking about them and they were very clearly visible -- because they said I didn't fit the "risk profile" for oral cancer. I had a truly miserable time with radiation, like many others here, but over time my mouth has healed remarkably well. It's important to remember that there is usually an extended recovery time from radiation (one rule of thumb is that it takes a month of recovery for each week of radiation), so be prepared.

I don't know if you've had a chance to look elsewhere on the OCF site (beyond this forum), but if you haven't, please be sure to check it out. There's a ton of very useful information there and the news section is updated continuously.

Cathy

Jennie- I'm sorry to hear you have become one of us (caregivers of people with oral cancer) but I'm really glad you found the OCF so quickly. I can't tell you how valuable it was, and continues to be, when we were going through the treatment stages. Everyone here has given you such wonderful advise. The only additional thing I can say is to ALWAYS feel free to "vent" here. This can be very overwhelming and often everyone is focused on the patient, you get pushed to the sidelines. YOU are just as important, your kids know that, and you will have just as many ups and downs emotionally and physically as your husband will. I remember most times I felt like I was being petty complaining about what I had to do and go through...your problems and fears are just as important! So...if you feel like you can't complain or vent to anyone else...do it here! We all care, will NEVER judge and we have all been there. I must tell you that I had to go on Lexapro during this entire ordeal...there is no shame in getting the help you need for yourself.

One last note. During the radiation/chemo treatments my husband's sense of smell was very sensative. He couldn't handle having me cook anything at the house...it either made him nauseous or made him sad cause he couldn't eat anything except via his PEG. So, you might want to start enlisting your family, friends and church members to make meals for your family. It will take a great burden off you and really help your husband.

Keep us updated. You are in my prayers.

Lorie

Jennie,

In answer to your question, I did not have to have a trach, but before surgery I was warned that I might wake up with one, it really depended on how swollen my neck got, how far back they went with the tongue tumor, and who knows what else. I gues I just got lucky about that (there were plenty of other things I didn't get lucky about, I'd forgotten that was one where I did so thanks for the reminder).

I was stage II so I did not know immediately after the surgery, at least not until the pathology report came back and actually not until I got a second openion form a CCC, that I would definitely have to have radiation and chemo, So I had to go back to the hospital for the PEG operation. Much better to get it done all at once though. He should be totally healed from both of those by the time he starts rad and chemo.

This is a long ordeal of a treatment, there is no question. So come here and vent whenever you need to adn if he feels up to it, encourage him to come and vent too. There's such reassurance in knowing that whatever difficult thing you are facing, there's probably someone here who's been through it too.

Nelie

Jennie,

When I had my surgery to remove 25 percent of my tongue, I knew from my biopsy that it would swell up tremendously. The doctor kept the vent in from surgery and kept me under in the ICU until the swelling went down, no trach needed. I think I was in ICU for 2 days, 1 because of the swelling, the 2nd because there were no beds close enough to the nursing station to satisfy my doctor. I went home on day 6 with the drain still in from my neck dissection of levels I, II and III on the right. Tumor was under the right side of my oral tongue.

Best of luck to Erik, keep us informed!

Sincerely,
Lisa

Jennie,
I don't know what kind of job you have, but did you consider taking family leave rather than quitting? Federal law allows up to 12 weeks of unpaid family leave to take care of a family member. Just a thought.

Take care,
Eileen

I am amazed with all of you who are responding to my original post. I cant even begin to tell all of you how thankful I am for this forum. It is really helping me to get the "correct" information, and you are all giving me some of what the future holds. The scariest part for me is the unknowns, what our life is going to be like with cancer, and what treatments are going to look and feel like. It is so nice to know that I can come here in my lonely and happy moments and share with all of you, and really have someone who understands exactly! I know so many men who have been in my spot, but never another woman, and to have this support is wonderful. I know I will have more questions, thank you for being there, hopefully I will have the insight for someone else down the line.
Eriks surgery is tomorrow morning, and so we are preparing all his favorites tonight!!! (minus the tomato sauces)

Jennie, you and Erik are in my thoughts and prayers. Love, Carol

Jennie,

I'll be thinking about you and your husband. Take it one step at a time. You'll make it through. You will need to take care of yourself so that you can take care of your husband.

As far as the trach. I had to have one. If your husband has to have one, tell him that it isn't as bad as it looks. After a few days my ENT gave me a valve for the trach that enabled me to talk with my family. Sounded strange but it did the job.

As for the amount of pain, it probably depends on each individual. I never really did feel much pain. I had a morphine pump when I was in ICU, and for a few days after I was moved to a regular room. Then I was weened off of it. All pain meds will more than likely be given intravenously.

Start planning now for your husbands home care. My wife worked with the hospital's social worker to set up a visiting nurse and speech therapist to visit our house. You'll probably see a speech therapist while your husband is still in the hospital.

It warrants repeating. Take care of yourself. And those two kids. I'm married and have two kids also. My wife and my kids are a big reason why I fought so hard and continue fighting. Your husband will need you throughout this ordeal.

We'll be thinking about you and your husband. Good luck tomorrow.

John

If you are taking some time off you may qualify for an hourly pay (within limits) through IHSS (In Home Supportive Services). They actually pay for stuff like doing laundry, shopping, errands, etc. and spouses are eligible. In CA, it is administered through the county welfare system. The American Cancer Society will also pay a mileage fee if your round trip is over 60 miles to and from the treatment center.

He's probably too young for SSDI but he might qualify for SDI. Check the SSI website for qualifications/eligibility and documentation requirements. SSDI and SDI are retroactive from the date of disability as a rule.

Ask for copies of all medical records and lab reports. You don't need actual scans but the scan reports are very helpful. You will also need a certified copy of his birth certificate for any federal claims.

I was disabled for almost 2 years and was in very good health going into it.

It's good that they are hitting this aggressively as his young age actually works against him a little bit.

It is the morning of surgery, and I am just ready to get the show on the road!! For those who were thinking about his disability status, Erik works for a medical device company, and they are being more than great about all of this, he has wonderful benefits, and plus co workers are pooling vacation time for him. I will be meeting a social worker today so I will ask about the stay at home caregiver benefits here in Washington.
Thank you for your prayers and support

hi jennie. good luck with surgery. i sent an email to you. i think your husband and i have quite similar situations.

Jennie
As soon as you can, let us know what is happening..
May your God walk with you..
Sunshine.. love and hugs
Helen

Hey everyone, three days down!!! Erik had surgery on Wed and it was supposed to be 3-4 hrs and turned into 6. But overall it was very successful. He ended up with 40% of his tongue removed with clear margins!!! (Hooray) and they did a radical neck dissection and we havent gotten the full pathology report yet. The doc did find another tumor lurking within, and behind the lymph nodes that was undetected on the MRI, which she removed. Erik is 6'4" and weighs almost 300 pounds, the doctor had a very hard time getting all the nodes, and that was why the surgery lasted so long. He woke in a lot of pain, and it took almost 8 hours to get it under control. He went to ICU and only spent 1 day there. Yesterday was good and he rested well, Today was really good in the A.M. he walked and talked (slurry) and then he was taken to get his PEG tube and well that put the whole day down the tube.(pardon the pun-Im exhausted) He hurt so much afterward, and then began to get nauseous, finally the nurse gave him some fenergan(sp) and he fell asleep, for about 2 hours, but meanwhile he didnt give himself any pain meds and well..got behind on the pain again. When I left tonight he was starting to get comfortable again. This truly seems to be a nightmare, I know it is bad right now, but does it get better? I hate that he is in pain, and plus so many people are trying to visit, its overwhelming to me just having to talk and keep them out of his room. Im kindof complaining, Im kindof just tired and I know Im rambling. I so appreciate those who have e-mailed me encouraging words, and tidbits of advice it sure is helpful to me. God bless all of you
Jennie

Jennie,
I can't sugar coat this for you - yes it will get better for a little while as recovery from surgery is fairly quick (unless there are infections and other complications). Just about the time he he feeling a little better then they will slam him with the radiation and chemo part of the treatment and that is far worse than the surgery part. He'll have a few weeks before the radiation effects set in then the real nightmare will begin.

Surgical recovery - about 3 weeks.

Radiation and chemo recovery - about 6 months.

I would keep the visitors to a minimum and DEMAND better pain mamagement - it is a PATIENT RIGHT! He should be getting oxycontin, demerol or morphine at this stage. Probably a drip that he can self administer as needed with a push button (PCA). The pain scale is 0-10 with 10 being totally unbearable - use those terms with the nurses and doctors they understand that.

see:

http://www.cancer.gov/cancertopics/paincontrol/page2

See page 9 in the link below

http://www.cancer.org/downloads/CRI/NCCN_pain.pdf

Jennie,

I had a lot of pain too immediately following the PEG insertion but the good news about this pain is it decreases quickly. For me, anything that involved any stomach miscle at all was agony for the first 12 hours, the next day was better (I could at least stand up wihtout being in agony), then there were a few days where it hurt to laugh or cough but I was lots better, a week later there was hardly any pain at all. My tongue surgery (which sounds similar to Erik's)and neck dissection was also surgery I healed from relatively quickly. Give it a few more days (and be sure he keeps up on the pain meds) and he'll be much better.

One practical suggestion about the people trying to visit his room (or even call). Make a phone list and/or email list of the people who are closest to him and will want to know how he's doing or to visit and then delegate one person in that group (not you--you have enough on your plate) to call or email the rest of those folks with updates about his health *including* whether visits are a good idea at the moment.

If you do this, its also a good idea to make clear to everyone in the group that you are doing this not because he and you don't want direct contact with them but because calls and visits can be overhwleming when someone is sick (I realized this when my brother was talking about having "been put on some sort of B list" with a friend fighting cancer--because he was getting updates from a friend of the friend isntead of the friend herself. I suggested to him that maybe *everyone* was on that "B list" right now simply so she wouldn't be overwhelmed and saw the lightbulb go on).

Hang in there Jennie. There are parts of this that do seem nightmarish--but the good news is that lots of us have been through that same nightmare and are holding you in our thoughts and here to give you and Erik support.

Nelie