HockeyDad

What kelly said. I'm alive even and will be even after getting cancer 3 x because I went to Comprehensive Cancer Center.
One bit of practical advice: get yourself a blood test right now to measure your TSH hormone level. You will want the exact number of the TSH so that after treatment, you can compare the TSH levels. The thyroid lab ranges are so large as to be meaningless for an individual (0.40 to 5.00) If you do not have you TSH number now, then you won't be able to get it back to where it needs to be. Maybe you will be lucky and not need thyroid medication but without a pre-treatment number, you will not be able to know. Do not think your oncologist knows what they are talking about in this area. Sad to say, they don't. Word to the wise.
Charm

Thanks for the info.

I had surgery that removed the node 8/24. At that time the doctor did not know it was cancer. However it was large and had to go. The biopsy found cancer.

As for the CCC in Cleveland. Its a little confusing. UH Seidman Cancer Center is part of Univerisity hospitols. It is also affiliated with Case CCC. Case CCC is affiliated with The Cleveland Clinic. All of the web sites are linked to each other. I don't know what to think.

We know exactly where you are and really what you are feeling. My husband was 52 when he was dx. We have 3 kids we had adopted 2 years before. They are now 15,13 and 11. It WAS a terrifying time, but we got through it. He was off work for 6 months but has been back since January.
The surgery they scheduled is probably to find the primary tumor. That was what they did a couple of days after our PET. They found it was BOT and couldn't see anything in any of the scopes. It was also HPV+ which has a much better prognosis.
Hang in there Hockey Dad. You can do this and we will be with you every step of the way. If your wife would like to speak with another caregiver I would be happy to talk to her. It will be overwhelming and her having an outlet is VERY important. I wish I had found this site earlier in our tx, but once I found it I had SO much support.
Keep in touch.
Blessings,
Kathy

Hello, just wanted to chime in and wish you the best.
You probably feel like you've woken up in some sort of horrific parallel universe - I know that's how my brother felt when diagnosed. But you'll get through it.
Post often, because in my experience, no issue is either too big or too small for the forum to offer information and support.

Welcome to OCF! Sorry you are here but glad you found the very best place for up to date correct medical info and support.

I am another member who suggests heading to a cancer center for another opinion. Surgeons cut and if they arent sure whats going on then you dont want things removed that shouldnt be. Its just a good plan to get checked out by a facility which sees many cases of oral cancer and a whole team of professionals will be following the NCI guidelines to make you well.
Cancer Centers

At this point you should be seeing a dentist to make sure your teeth are in good shape. They should make a mold just in case you will do radiation, you will need flouride trays made. Get the full blood work done including thyroid. Many of us (including myself) have had their thyroids crap out after going thru cancer treatments. Right now, eat all your favorites and make sure you hit up all your favorite restaurants. Your sense of taste will change for a while and swallowing may become difficult so you want to get all your cravings in now. Every person who offers to help you , write down their name and number and let them know you will call on them when the time comes. This battle is not easy but with help it can be much easier on everyone. Dont be afraid or too proud to ask and accept help from friends and relatives.

Since you mentioned Cleveland, I will be there next week as the speaker for the Cleveland oral cancer awareness walk. It would be great if you and your family would come out. You would get to meet other survivors and get some important info about oral cancer. Plus, oral cancer survivors are free!
Cleveland walk

HD,

I know we're throwing a lot at you but this is a critical time and believe me different docs do different things when it comes to this cancer and not all are necessary and some have unnecessary life altering consequenses. One of these is unnecessary surgery so that's why we are harping on getting a 2nd opinion from a CCC as they see 100's of your presentations a year vs a typical ENT seeing maybe less than 10.

Your presentation is VERY common in the oral cancer world. Finding the painless lump is very often the first clue that we had this cancer growing in our body and because it has already spread from the Primary to a node, it's already Staged a III so like me, you are very fortunate that your ENT persisted otherwise the next spread would have been deadly. Your presentation will probably result in your cancer being positive for HPV which is good in that studies have concluded that HPV+ SCC responds better to existing Tx than HPV- SCC and therefore that chances of a recurrence is less. What they do want to do right now is to try and find your Primary.

Here's my short story. One day, while shaving, I found a totally painless lump in my neck. Totally healthy, never been sick a day in my life except colds, etc. Riding my bike 100 miles a week. Exercise and health nut. I ignored it. A month later it was still there, no bigger? and still painless but I showed it to my wife. She called me every name in the latin book. Got me an appt that day with a doc. He said "don't know what it is BUT it needs to stay." Not satisfied she got me another appt with a neck surgeon. He said "don't know what it is BUT it needs to come out." Wife happy, me not. I told my wife I needed another opinion. Again the latin words poured from her sweet lips. Went to see my neighbor, a MO, who put me on antibiotics. After 2 weeks I came back and HE SHOOK MY HAND AND SAID "CONGRATUATIONS YOU DON"T HAVE CANCER!!" Me really happy, wife very quiet. Not satisfied my wife tricked me into taking her Mom to another ENT who after seeing her Mom turned to me and said I understand I need to look at that lump in your neck. He did an FNA. Two weeks later told me I had SCC and after performing a radical neck dissection I would have chemo and rad and he gave me a 60% chance of surviving 5 years. I fainted. He also told me he would get me in at Moffitt. While waiting for Moffitt, a CCC, I went back to my neighbor MO who said only a partial neck dissection followed by chemo/rad and he gave me a 70% chance. Got in at Moffitt and they said NO surgery just chemo/rad and a 90% survival chance. Who you gonna use? lol Moffitt did put me under to find my primary and luckily it was the first spot they looked at, my BOT.

Moral of story, just don't take the first opinion thrown at you and listen to your wife!

ditto what everyone said and welcome, youR ENT was on the ball and acting in your best interest by booking the surgical date post pet - he wanted to make sure he had the available time. Welcome and best of luck. You'll get through it!

Thanks David 2.

Ours situation looks similar. He already removed the big lymph node. He did not remove anything else. I have a slight discoloration on the left side of tomgue(same side node). 1/4" high 1 in long. But tongues are weird looking any way. Could just be where I bite it. ENT did not think it looked suspicious. He does have several other Oral cancer case right now.

PET Scheduled for Wednesday 5th. He said we have to stage it. Follow up surgery 12th. Biopsy what he sees. Dig at the tonsils (and I still have mine)and try to find something.

Is this fast enough?
When do I contact other parties for second opinions?

Right now all I have is Clear CAT, and Biopsy Left lymph node positive SCC. No primary not PET.

You want a second opinion ASAP. Knowlage is everything in this fight.

I found two cancer treatment center in Cleveland. Cleveland Clinic Taussig Cancer Institued and University Hosipital Seidmen Cancer Center. Both are affiliated with Case western University CCC. My ENT is sending my stuff to UH Seidmen center.

Has any one use these facilities before? I would like to look at both.