Hi y'all -

My 35-year-old, non-smoking/non-drinking husband was diagnosed on October 11 with oral tongue squamous cell carcinoma (T3N1M0), left lateral tongue. HPV results are equivocal but the cancer is acting like HPV - it's very aggressive and fast-acting. His initial biopsy in July showed only dysplasia, and then in October it was definitely SCC (moderately differentiated).

He had a partial glossectomy and left selective neck dissection (levels 2, 3, and 4 - 26 nodes in total) last week, on November 1 - we got home from the hospital on Sunday. Today we met with his surgeon for follow-up and to get the path results on the lymph nodes, so now we're looking at radiation in 3 weeks (we're supposed to get the first call from the radiation oncologist tomorrow).

This has been unbelievably fast and completely surreal. I feel like just as I get my head wrapped around one part of it, something new comes up. And I am just...drowning in this. We both have a good support system but I don't feel like I can be anything other than really upbeat and positive when talking to folks. And y'all, I am SO ANGRY about this. I am furious that this is happening to my husband and to our family (we have a 6-year-old daughter), and I need people who understand that.

So...hi. I hate any of us have to be here but I'm really grateful that this place exists.

Hi Heather,
I am glad you found OCF. Glad to hear your husbands surgery was successful. I had a similar surgery (more extensive), radiation and treatment and 6 years later I am living a pretty normal life.
I was 33 at diagnosis and I'm 39 now. I wasn't the demographic either.
I have a signifigant speech impediment due to full glossectomy but I am still very intelligible. Most people understand me once they hear me a few times.. Your husband will have even better speech.

I know this is an incredibly scary experience for you and your family.
I am sending you good thoughts and hoping for the best possible outcome.

After he finishes radiation he'll soon start to get better and better every day. Its a long healing process but things will be better for all of you all soon.

Hang in there and if you have any questions for me you can ask me or send a message.

KATE

Welcome to OCF, Heather! So sorry you have to go thru all of this with your husband. A cargeivers job is not an easy one. Its full of stress while you are crying on the inside but smiling on the outside and on top of that trying to maintain a somewhat normal life for your family. No wonder you are angry! Its ok, we understand exactly where you are coming from.

This site will help you get thru everything. Its full of current, correct medical info and wonderful moral support.

Best wishes!!

Heather,

Believe me, we understand everything you, your husband and your child are experiencing right now. We will be here 24/7 to help you and your family through this bump in life's road. Don't hesitate to ask ANYTHING and I mean ANYTHING. Take a pad and pen with you to all future appts and take notes. Don't be afraid to ask the doc to repeat his comments.

Ask his primary dentist to make dental trays for daily fluoride treatments and begin those asap. Have his TSH blood levels checked pre radiation and record that number for potential use post Tx. As soon as he can encourage him to eat eat eat and eat some more every day as we all loose weight during rad.

Let us know what they say about chemo.

Stay as calm as possible and we'll get you through this.

Hi Heather,
I know exactly where you are. I was devastated when Kevin was finally diagnosed. It rocks you to your very core and there are so many emotions all at once that you really feel like you're going to explode. Allow yourself these feelings for a day or 2, then buckle up and get ready for the battle. You will be amazed at how strong you are once you are under way and know you are now ridding his body of the cancer.
We had just adopted 3 siblings from the foster system 2 years before diagnosis, so I understand the worry for your child too. One thing I would say is don't say Daddy will be fine when they can see he obviously isn't fine. Our kids were older and more involved, but, of course at 6, they won't understand all the technical stuff. Daddy's just going to be sick for awhile. At least that way when he looks like heck for a bit they aren't too scared because they were forewarned.
I found that family was NOT the place to vent when we were going through this because they were as frustrated and scared as I was. I would cry in the shower, then put my warrior face back on and go at it.
Everyone will tell you to try to take time for yourself. That is a hard thing to do, but what I would recommend is coming on here as often as you can and get your boost of fellowship and encouragement. I didn't find this site until the end of our tx. It was a Godsend to me to KNOW others understood.
Lastly, let those who offer to help, help. Make a list of things that you need done and let them choose something. Let them order a pizza. Anything that makes them feel like they are contributing. Don't be surprised if some of your closer friends tend to stay away. They can't handle it and don't know what to say. Try not to take it personally.
We are here for you. Hang in there.
Blessings,
Kathy

Heather, I know that just hearing the word cancer can seem like the end of the world. You and your husband are meeting this bravely and well. We are all here for you.

heather... you're in texas... go to MD anderson if at all possible. It is the best! It does sound very aggressive. I imagine it was poorly differentiated on biopsy. 5 weeks from surgery sounds about right for rads. It will definitely be a long haul. but you will get through it. Tell your hubby to eat as much as possible now. Gain weight if he can. Rads takes a toll on your ability to eat.
Read up and educate yourself. There are a lot of things that can help with the symptoms and fall out from treatment.

hugs and let go of your anger. education is your best weapon. take care

It was moderately differentiated. His surgeon offered us an MDA referral but we decided that it would be easier to treat it here, especially if he needed radiation. So, here we are.

Seriously MDA is the absolute best facility for treatment I your neck of the woods. It's one of the best. Having to travel I am sure is inconvenient - but as you've said his cancer appears aggressive - and rads is only for six weeks - its worth the inconvenience to make sure he gets the absolute best treatment possible. his life depends on it and sometimes with this cancer you only get one good shot. I know it seems radiation is radiation, but there's more to it than that. I'm Canadian but if I had to choose an American hospital to receive treatment at it would be MDA. this is one of the things we always tell newcomers - get treatment at a top notch ccc. Take care.

I agree, we all agree, please don't scarifice the best chance for his treatment for mere convenience. IF and that may be a HUGE IF, all things are EQUAL, then the decision should consider secondary considerations so please do your homework and make sure all is equal before inconvenience is discussed.