Hello everyone.
I'm scared.
I'm 52 and was just diagnosed a week ago with squamous cell carcinoma with the originating tumor in my tonsil area. Thought it was just a swollen thyroid gland from having a cold. Silly me. Surprise, surprise.
Having lost my father to pancreatic cancer when he was 43 and I was 8, the word, "Cancer" scared the hell out of me. My wife and I have 2 young boys who we have not told yet until we decide on which treatment we'll choose.
Next week, we're meeting with a radiologist/chemo team in LA to try and help me choose between surgery first to remove my tonsils and some extra tissue and several lymph nodes near my chin, OR just do chemo/radiation to get rid of the cancer first, and then see if that does it.
Your advice, experience, understanding and compassion would be very welcome at this time. My wife and I understand how lucky we are that the doctors tell us this is a "Treatable" and "Curable" cancer. But that doesn't stop me from being frightened. And I want to make the right choice, not out of fear, as to which road we walk.
I look forward to hearing from you.
Thank you...
Sincerely,
Adam

Adam, I'm in LA too. If there's anything I can do to help please let me know via PM.

I too was told by my radiation oncologist that they'd "get me through this". And they did. We're all here to help. You're now a member of our family.

Sorry you had to join, but welcome, Adam. I had tonsil cancer also that was diagnosed in 2009, as well as many others here, some with BOT, which is in the oropharynx also and treated similar. You're doing right by joining here, and educating yourself to make an informed decision with your family and doctors. It's difficult to say what to do since we're not doctors, don't have all the available information, but we can say what we went through and any insight into that. You're right, tonsil cancer is treatable, and has better prognosis if HPV related, so the biopsy sample can be tested for that, and should, and sometimes a p16 marker is used first. Anyway, all these terms will become familiar to you as time goes on. I didn't even know what an oncologist or an ENT, Ear, Nose and throat doctor, an otolaryngologist, was when I started.

Having choices are good. Basically, this cancer is treated with Surgery, Radiation or chemoradiation or a combination thereof. See the below OCF link with treatment information. Just about anything you need to know is here, and of course, ask your medical team also, and always keep them up to date.

Try to start your signature when you have a chance. It will avoid unnecessary questions, and let everyone know the type of HNC cancer you have, how many Lymph nodes are involved, what tests were done, your stage, tumor size, grade if you know, etc. Everyone has one at the bottom of their page, is limited to 500 characters, and you can see what everyone's else's treatment were also.

http://www.oralcancerfoundation.org/understanding/

If you have any questions, ask anytime. Good luck.

Hi Adam, I'm sorry too that you have need of this fabulous site. Of course you are scared. We certainly were, actually I was terrified. Your team is correct though, tonsil/ Oropharyngeal cancer is a very curable disease.
Paul has given you great advice and a great link to help with further information.
I want to add by asking and advising you to get to a Comprhensive Cancer Center. A CCC. These centres treat many many with this same disease and have experience. A local cancer Center may only see a couple of tonsil cancers a year. Research has proven CCC's to have better outcomes for their patients. They have a whole team approach with your case discussed by a tumour board. This consists of surgeons , chemo docs, radiation docs , dentists, Speech therapists, dieticians and many more.
Read as much as you can, ask many questions. We will all help you.
Tammy

David-Thank you so much for responding.
And I shall go thru the site and learn and get informed.
From the bottom of my heart-
Thank you.

Hi Paul!
Thanks so much for your response.
I will add the details to what I've got and so appreciate your kindness.
Adam

Hi Tammy!
Thank you so much for your response.
I feel like I'm very lucky and even luckier to have found this blog.
With all my thanks-
adam

Hi Everyone!
My wife and I are going to meet with the chemo/radiation team this Wednesday to hear their thoughts. My cousin, who is a bio-chemist, will be there via phone at my request, if they allow that. He's been working with various companies on a cure for this type of cancer that involves T-cell and the immunotherapy route, as it seems to be the future of curing this dreadful disease.
I'm looking forward to hearing what this Board says. The surgeon isn't pushing surgery, but I get the feeling it's where I'm leaning at this time.
I so appreciate having this support group to turn to.
Yours-
adam

Welcome to the best club nobody wants to join. I'm no doctor, but my guess is the trifecta surgery, rads, with chemo. All three can be brutal on the body, the good news, being HPV pos means you have a good chance of kicking this in the but.

However the next 4-5 months are no picnic. Go a head and tell the boys your situation. I told mine. Hopefully your boys can help out around the house, yard, garage. I was so weak when I was deep in treatment, that taking out the garbage was an event. Get as much of this stuff done now.

Hopefully next year you will be able to look back on it as just a rough summer and that's all. Mine was just a rough winter.

Good luck and post often. It really helps you and everyone else on the boards.

That's great, Adam (under the trying circumstances of course). Glad you've got a solid team both medically and personally. As folks have said, the HPV positive status is a good indicator. Please keep us posted of your doc visit tomorrow. I too can attest to the fatigue issue. By the end of the second week of rads I could barely get out of bed. But you, like me, will definitely get through this.

Courage!

Hi Adam. I'm new at this myself, having received a preliminary diagosis on March 26 this year that was confirmed via scan the following day. My diagnosis was very similar to yours.

I was given the option of surgery-before-radiation, with the possibility of chemo-radiation if surgery showed cancer cells had escaped the lymph node. Or I could have just gone the radiation/chemo route based on what they saw in the CT scan, with possible surgical follow-up. I chose the surgery-first option for two reasons. The first was that I just wanted the d***ed tumor out of me, and the second was that the neck dissection would show conclusively whether we had escaped cancer cells - meaning that chemo might not be necessary.

In my case I'm ending up with the trifecta (surgery, radiation and chemo). And I feel pretty good about that because we're throwing everything possible at the cancer. Surgical recovery time was about 2 weeks, although I took 3 off work just to be sure I was fully rested. And it feels really good to have the tumor(s) gone!

I've learned a lot from the folks here about the toxic side effects of chemo-radiation, and that has helped prepare me for what's ahead. You'll get the same great information and support here to help you make your decision. Best of luck.

Wow, Peter!
Sorry to hear you went through this as well.
Here's my worry about surgery. Years ago, I had a horrifying experience with a catheter coming half way out while I was awake. They tried to put it back in but were hurting me. It finally did go in, but I'd prefer never having that inserted again. Can you believe THAT'S one of my fears about surgery?
Did you have to have one?
I also worry about surgery in general but they're proposing robotic surgery and/or laser trans-oral surgery?? I'll know more tomorrow but really appreciate your advice.
Thanks!
adam

HI Adam, glad you found this site. I used to live in L.A., lots of great medical centers out there. Sorry to hear of your diagnosis. It does sound like you have a supportive family and that's important.
It sure is scary. I have always been a "toughie" but this just knocked me off my feet. Still scared as a matter of fact. But there is lots of hope as noted by so many posters on this website.
Good luck to you. Keep us posted.
Denise

Thank you so much, Denise! Big meeting today with the chemo/radiation doctors and surgeon. I'm anxious and nervous to hear what they recommend I begin with, but I'm ready to move forward.
Again, thank you.
Sincerely,
Adam

Hey Adam. I *did* have a catheter, but they neglected to tell me about it. The funny thing about that was that after I got back to my room and tried to pee for the first time it burned like crazy. When the nurse asked what was wrong I told her, and then she told me about the catheter. So for the rest of that night whenever I had to go it was pee a little, tighten up because of the burning, pee a little....you get the picture. Kind of like my Labrador when he lifts his leg on a tree - coming out in spurts.

As to the type of surgery, I was hoping for TORS but they couldn't get the robot without a 2-week delay. Rather than wait I had the TOLM which worked out fine. My surgeon does both and said there are certain advantages to TOLM because using the microscope allows for easier/better viewing of tumor margins.

Hope your consult today went well. Let us know?

How did the meeting go, Adam? Hope all went well!

It went well.
I believe I'm leaning towards doing the surgery first. Take out the cancer. Analyze the tissue and then go for radiation and possibly chemo...but one step at a time.
Thank you for your support!

Sounds like a plan. Good luck!

One step at a time is a daily mantra for me. Your plan is the way I went with my diagnosis, and I haven't regretted it. It just feels good to have that primary tumor gone! Best wishes Adam.

great choice... as long as you are happy with it that's terrific. Best of luck here's to hoping it happens quickly, goes well and you get a favorable pathology report back. hugs!