Hi. I'm not sure if i should post here or on the caregiver board. Just got back from the ENT with my husband. He was told he has tongue cancer with node involvement. I was surprised he could tell this before the PET and MRI (we go next week) but I guess he does it from look.
The guy freaked me out. He was literally doing deep breathing exercises and seemed rattled while talking to my husband. first time we met this guy so I can't tell if he was giving my husband a "death sentence" or just wasn't used to telling folks they have cancer.
This may sound like a stupid question but if it is in the nodes in the neck does that usually mean it has spread elsewhere? He said the nodes weren't bad but he "didn't like" that it was on both sides.
He really made feel awful(along with the news). any help would really be appreciated.

Susan

Relax and take a deep breath. Then relax again. Sorry you had to join our little club. Please don't be so alarmed about "node involvement". It is very very common for patients with tongue cancer to also have some lymph nodes involved. In fact, it is so common, that many posters here have had Neck dissections (ND) [the surgeon takes out the lymph nodes to see if they have cancer]. This is not pancreatic cancer. It is NOT a death sentence.
Your question is not stupid. While it would be better if the cancer had stayed in the tongue and not gone into the lymph nodes, it does NOT mean that it has spread anywhere else. I had lymph node involvement and it has not spread to my lungs, etc or anywhere except those nodes and the tongue
Charm

Welcome, Susan. Caregivers Rock! Most people on here have had node involvement and I don't think it neccessarily means anything more than that, though of course, it could. Mine spread to the nodes on the right side and it was dealt with by radiation and chemo without surgery. Others have had both and some surgery without radiation or chemo. In other words, there is a wide range of variety. ENTs are on the front lines of this fight so it sounds like you may have a newbie there if he's not used to dealing with this. You may want to check out a comprehensive cancer care center where they are devoted to nothing but. You will no doubt hear that numerous times. Meanwhile, gear up cause this means war and info is your best weapon. This site is loaded with info.

Welcome Susan,

Did your husband have a biopsy? It is the only way to diagnose oral cancer.

This disease should not be handled by ENTs who do not specialize in oral cancer. Find a CCC (Comprehensive Cancer Center) and have him see an ENT there.

My best to you,

Susan,

Here is some information about CCC's provided by Leslie B to another new poster (hope you don't mind, Leslie, but nobody can say it better than you!).

Hope it helps.

[quote=Leslie B]...you will see so many recommendations here to get an opinion (or two, or more) from a comprehensive cancer center, or CCC. At such a facility your husband's case will be evaluated by a "tumor board" of medical professionals from a variety of specialties. They will discuss his case and come up with a treatment plan. Many CCCs have specialized head and neck cancer clinics -- and because these cancers can affect so many vital functions, it is critical to have a team of professionals who are familiar with this disease working together for the best outcome.

To learn more about CCCs, you can start here Another source of information is the National Comprehensive Cancer Network, an alliance of about 20 of the country's leading cancer centers. It's this group that devises the annual treatment protocols used by hospitals across the country.
[/quote]

Wow. thank you so much for the quick responses. I think I found a sane place to be.
He literally just went to the ENT today.So, the biopsy was done today. It obviously wasn't looked at yet but he assured us he was positive it was cancer(maybe by history? 67 year old male who smokes with a "wound---for lack of a better word) on tongue.
He also seemed very sure it was in both nodes. How does one know that without a scan of some sort. Don't nodes sometimes get big from infection(ie-my husband has a cold).
He also told us the treatment would probably be 7 weeks of combined chemo and radiation and then a "mop-up"(surgery,if needed).
He was so nervous telling us that I kept wondering if he was trying to give us an unspoken,get your affairs in order. I have never seen a Dr that rattled. it was scary.
We are not going to stay with him. I think the advice to go to a center is excellent. but we did go ahead and schedule the MRI and pet.
Is a pet scan common. I guess given his reaction I thought he was ordering it because he thought it spread. How does one have so much info just by scope and unread biopsy?
Also, do folks have any opinions about these "cutting edge" technology I'm reading about a la Sloan or Mayo,etc.
Again. THANK YOU. REALLY.
One more thing he also told him he would need a feeding tube. at what point is that done???

Susan,

Like was said before, THERE IS NO WAY THAT DOC CAN TELL IF IT'S CANCER WITHOUT THE RESULTS FROM THE BIOPSY.

BTW what did he biopsy? The tongue, nodes on one side or both sides? Typically the path reports will take a week or 2 to get back so hang in there.

Jumping ahead, if we assume the path comes back positive, I would definitely get to a CCC:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I personally would not let this ENT oversee the Tx.

Again lets not get to wrapped up in the Tx until we know what the path report says.

The ONLY way to diagnose oral cancer is with a biopsy. That being said, your husband's symptoms and smoking history are not good. He must cease all tobacco use IMMEDIATELY. People who continue to smoke after diagnosis of oral cancer do not survive.

I'm sorry if this adds to your stress, but others here will agree with me.

And, you have found a sane and caring place to be.

i think i'm going to move in to this forum. I can feel my sanity slowly return as I read the responses and different threads on the board.
My instinct on this Dr was no way would we continue(I'd at least like one calmer than me).
I did think it was odd he told us so much already. I just figured that they could look at the tongue with a scope and see that it is irregular. In fact, he said that even if this biopsy came back clean he would keep going because he was so sure. I don't believe he biopsied the nodes but I will check with my husband. I thought he said he felt them and that he could see there was involvement on both sides.
And good advice, on not jumping ahead on tx issues. I guess I was responding to all the info thrown at me today. I need to slow down. it all just seems unreal.
I've been married a long time and am still madly in love with my husband. I just want to be supportive in every way possible.
Catherine, he did stop smoking immediately. He's done. And I agree it's essential.

Susan,

My ENT was much calmer but did tell me on the oral exam that he thought it was cancer, as he was getting ready to do a biopsy. He did the biopsy right then and I had the results in two days.

He said he would be very surprised if the biopsy came back negative. It was clear he had seen this before. He was right, but I did not go into overdrive until the biopsy results came back.

I think all of us have had some combination of a PET, CT or MRI scan. I got a CT many here have had PET scans others MRI�s. These are diagnostic tools and will help with the staging process (determine what stage he is at) its part of the process and you can�t draw ant conclusions from it.

I looked at proton therapy. The newest latest and greatest treatment for cancer. I had great advise and second opinions from two CCC�s. At the end of the day I chose the recommendation of the CCC�s and did IGRT radiation. I did not need chemo or surgery .

If you have questions on the latest treatments, please post them here. There are a lot of pro�s here who know the in�s and outs of the latest treatment options.

Kelly