Hello, everyone. I was diagnosed in early April after an allergist found an enlarged lymph node that didn't go away. I've never smoked and don't drink much so my doctor wasn't all that concerned but after 3 weeks we did a CT scan that turned up SCC in the right tongue base with a couple of nodes. A PET/CT scan confirmed this but showed no metastatic spread. A tongue biopsy followed and then a lot of meetings with various doctors until I settled on a treatment plan.

A neck dissection followed and then the pre-radiation "sims" and dental shield. Had an "induction" round of chemo because the neck biopsy found a Level 3 node that didn't show up on the scans and all 3 were extracapsulated.

Just had a port put in for the chemo, my 3rd surgery in the last 6 weeks. But all the pretreatment stuff is done now and I'm waiting to begin radiation and chemo on June 4th. I'm a bit nervous but also very glad to be starting the primary treatment. It seems like forever since the initial diagnosis and I know this cancer moves fast.

I am very glad to have found this Patient Forum. My wife has had breast cancer, twice, both 12 and 16 years ago and I know how much that Forum meant to her.

At the same time, I admit it's been hard to write this first post. I've always been a very private person and much more comfortable taking care of others than asking for help myself. So I see that this cancer is also an opportunity for me to go beyond a lot of self-imposed limitations. My wife says that she's much happier now, after the two cancers, than she was before. I always understood that intellectually, but now see it in an entirely different way.

I have some questions to pose to the group but will put them in separate emails later.

David R

Welcome, David. The first step can be the hardest, and you've already taken it.

To help you get started, OCF has two search engines. The one at the top of each of these forum pages (in the center, under the New Topic/Post Reply buttons) links to a search of the message boards -- be sure to search "All Open Forums" to maximize your results. The link at the bottom of each of these pages (toward the right in the dark gray area) goes to a search of the main OCF site, which Brian and other administrators keep updated with the latest treatment protocols, news articles, reports in scientific journals, etc. It also includes a lot of basic reference material about oral cancer.

And if those don't address whatever you want to know more about, the people on these boards can answer any question you throw at them.

We'll all be thinking of you as you begin your treatment next week.

-- Leslie

Thanks, Leslie

This is very helpful information. And you're right, I felt much better after sending that first post. It's amazing how hard it seemed before and how easy it seems now.

All best,
David

Welcome, David and Best luck with your tx. OCF will be a great help to you [and your wife as caregiver]. Don't hesitate to "ask away". Take care. Amy in the Ozarks

Thanks, Amy. I feel good to be finally connected to the group. It's been something I've been putting off for a month while lurking in the background. Reading the many posts has been very helpful but I'm glad to finally be fully participating. David R

David,

Have you been tested for HPV? Judging by your post I would assume you would test positive.

Thanks for the reminder. I have not yet been tested for HPV and, like you, assume I would test postivie. It's on the long list of things I still need to do.

My wife wonders if she should also be tested -- do you know anything about spouses?

David R.

Welcome aboard David,

I did the same thing as you have done and signed up and kinda sat around in the shadows for awhile. I now only have 3 Tx to go and am looking forward to a more " normal " life. As you can see I have returned here and I can promise you that you will find none better for helping with your needs than the ones here on this forum.

Hi David, there's tons of information on this subject that you can find by doing a search on the forum and the home page.

The testing process for head and neck cancers caused by the HPV 16 virus is done on your tumor slides, and not all hospitals do the test. We had Jack's slides sent to Johns Hopkins in Baltimore because it wasn't available locally.

That said, it won't change your treatment plan. We didn't worry about it until after he was thru the chemo/radiation - too much going on. Jack's was positive but there are others on the forum that also had no risk factors and tested negative. About 4 months after treatment Jack participated in a clinical trial at Hopkins testing a vaccine. This is only a phase 1 trial so they don't know what the best dose is or if it will work in preventing recurrence. It is not the same as the guardisal vaccine you are probably seeing ads for on TV for cervical cancer.

The test for your wife would be handled thru her GYN, that's a simple process. I think that's a good idea in general and please feel free to have her send me a private message if she has specific questions.

Good luck next week. This too shall pass. Jack found the mask was hard to deal with and used Ativan for that. Make sure you are getting between 2-3 quarts of liquid as well as 2200 calories or more daily. That's the best way to assist your body to handle the treatments. Are you going to have amifostine injections? If so, it's even more important to stay well hydrated. Keep swallowing and stretching your mouth muscles open and closed to prevent trismus later - also lots of information on that subject.
Regards JoAnne

Thanks, Billy and JoAnne. I appreciate the warm welcome and the good advice. I am not having amifostine injections. I will ask the docs about that. I plan to read more on the forum about dealing with the effects of these treatments. I did not have a problem with the mask during the sim and the follow-up x-ray, but who knows how the actual treatment will go. I take Klonopin when I feel especially anxious. Thanks again, David