I was recently diagnosed with stage IVA SCC with an tonsil origin. I'm starting concurrent radiation (IMRT) + chemo (cisplatin) next week. Cancer has spread from the tonsil down to the back of the tongue and the same side lymph node. Ready to get started, I feel that the waiting is the hardest part. The other issue was that there were so many different opinions on my treatment plan. Some doctors recommended surgery with radiation (but no chemo). Others recommended radiation (some both sides of neck, some only one side of neck) with chemo. After a PET, my cancer center of choice recommended against surgery due to potential issues with the tonsil margins, which made it easier to get the ball rolling.

I'm enrolled in a clinical trial using a special type of cyclotron for hypoxic cell detection in HPV+ cancers, with the potential for radiation deescalation if there are no hypoxic cells (with a small neck dissection/lymph note check up if deescalated.)

HPV status is questionable. A recent FNA was not positive for HPV, but I had a core biopsy to diagnose the cancer, so that is being tested currently. Hoping for good news from the HPV stains in the next few days as docs have mentioned they have seen FNA fail to detect HPV because smaller scope of cells extracted. My bio (non-smoker except wedding cigars, social drinking), young age (25), athletic, and the look of the cancer cells on tongue (? - mentioned by the 1 surgeon who saw the cancer on the tongue as well) all supported a HPV diagnosis. All of the doctors have said they are almost certain its HPV, with the caveat that I'm very young to have an HPV viral infection which results in cancer.

All the information I've read here, both on the site and the forum, have been very helpful. Thanks everyone for your contributions. I'm sure I'll have more questions as we get down to business.

Been eating like a champ, now its time to kick some cancer butt.

Welcome to OCF, Andrew! So sorry to hear you are a cancer patient at the young age of 25. You are only a little older than my son.

I would be very surprised if the HPV status came back negative. Please update us when you find out.

Best wishes with everything you are facing. We will help you thru this with info and support.

Good luck!!!

Sorry you have to come here, but welcome. As you were probably told, HPV cancer has a better response to chemoradiation, and prognosis, so in this case it's good if it does come back positive, and almost always involves the tonsil, and base of tongue. The size of the tumor, in the TNM grading, and the thickness of the tumor also helps determine the extent of treatment. The tonsil, BOT have propensity to metastasize due to the high lymphatics, and sometimes bilaterally, so that's why some may want both sides radiated, and each institution may have different treatments, as well as the doctors. Tumor Hypoxia, from angeogeneis, others, is an area of interest these days, and may cause radiation and chemo resistance. This is the first I'm reading in a blog of someone being tested. What hospital in NYC? I go to Mt. Sinai and Beth Israel in NYC.

Good luck with everything.

Welcome... very sorry you're here - It sounds on paper like HPV but you are very young for that type of cancer. Hopefully it is - just because the treatment generally has a better response. If it isn't HPV then I would agree with having both sides radiated and possibly surgery. Just because of the amount of involvement and your age. Take care, and read I'm on treatment if you can.

Weclome aboard the bus Andrew.

You are really young and fit so very good for making best of any treatment plan you have. don

Andrew, sorry that you have to come on this roller coaster ride. Please know that you are among friends here, so feel free to come back again and again to vent, ask questions or just read about others' experiences. Now is the time to eat, eat and eat. Once you start treatment, you will not be able to eat your favorite foods for a while. You will also need the extra pounds you put on now to help you through the tough treatment. Best of luck!

Ditto everything you've read from other posters about being here. I remember when i found the lump (mass), was diagnosed and finally started treatment the process took a little longer than two months. And, yes, Tom Petty is right, the waiting is the hardest part. I did find xanax a great anxiety reliever. It stopped my mind from racing around at night. I quit taking it the day i started treatment.

There are a lot of us on this forum that have had tonsil/BOT tumors treated with rads and chemo alone. My team of doctors, including the ENT/surgeon, agreed that they shouldn't cut unless they had to. Their plan was to follow up with surgery only if necessary.

Keep eating and keep us posted.

Andrew, glad you found us. You're part of the family now and we're all here to help. Good thoughts flowing your way.

Hi Andrew,
Welcome to the gang!! We all know what you are going through and will be here until you are done and even after! You have the right idea to eat all you can now.
Our doc said no surgery, just the induction chemo,then Erbitux along with tons of radiation!!
Once tx starts you know you are in battle mode so it's a little easier.
Keep in touch!!
Kathy

Welcome Andrew, and best of luck to you ion this fight.